1. Child Deaths South Australia 2005–2019
1.1. Analysis and review of child deaths
The intent of the Committee is to improve the safety and wellbeing of children and young people in South Australia. It does this by collecting information about the circumstances and causes of all child deaths in South Australia, analysing and reviewing this information, making recommendations to relevant agencies, and monitoring the implementation of those recommendations. The Committee reviews specific cases of child death, and from time to time also reviews and analyses information about serious injuries.
1.2. Rates and patterns of death
Opportunities for prevention and intervention to improve the safety and wellbeing of children and young people can be identified through the systemic collection and analysis of information about child deaths. Section 37 of the Children and Young People (Oversight and Advocacy Bodies) Act 20163 identifies those deaths as eligible for review if: (a) the incident resulting in the child’s death or serious injury occurred in the state; or (b) the child was, at the time of the death or serious injury, ordinarily resident in the state.
As required by the Act, the Committee maintains a database of child deaths and serious injuries, to which it continually adds information that informs its analyses about rates and patterns of child death in South Australia. Figure 14 shows death rates for all children and young people who died in South Australia during the 15 years from 2005 to 2019, while Figure 2 shows death rates for children and young people who were usually resident in South Australia.
In 2019, the number of deaths of children and young people was the lowest recorded for 15 years. Much of this decrease is attributable to a smaller number of infant deaths (see Section 1.7).
During this 15 year period, the average yearly population of children and young people aged 0 to 17 was 356,1495.
4 For each figure in Section One, there is a corresponding data table in Section 4.
5 For more information on how this number was calculated, see Section 3.1.3
1.2.1. Death rates by region
Important issues for service planning and delivery are highlighted when death rates and numbers of deaths are mapped against the South Australian Government’s twelve administrative regions.
The highest rate of death for children and young people is associated with living in the Far North region of the state. In contrast, the greatest number of deaths is recorded in the Northern Adelaide region. Services should be planned and delivered to take into account regions where the rate of death is highest, and regions where the greatest number of deaths occur.
1.2.2. Death rates of non-resident children and young people
Ninety-two (6%) of the 1633 children and young people who died in South Australia between 2005 and 2019, were usually resident in another state, territory, or country.
Figure 5: Number of deaths by state, territory or country of residence and cultural background, for children and young people not usually resident in South Australia, 2005–2019
Of the 98 non-resident children and young people who died in South Australia between 2005 and 2019, 48 were from the Northern Territory and thirty of these 48 were Aboriginal children and young people.
Many of the deaths occurring in South Australia reflect cross-border arrangements where seriously ill children and young people are brought to Adelaide for treatment of complex medical conditions associated with extreme prematurity, infant and childhood illness, and various external causes.
1.2.3. Death rates and socioeconomic disadvantage
More children and young people die in areas of South Australia where there are greater levels of socioeconomic disadvantage6 . The relationship between child deaths and socioeconomic disadvantage is shown in Figure 6. Deaths of all children and young people between 2005 and 2019, resident and non-resident, were included in this analysis.
6 For information on how socioeconomic disadvantage is defined and used in this Annual Report, see Section 3.1.3
Figure 6: Death rate by Index of Relative Socio-Economic Disadvantage for all children and young people who died in South Australia, 2005–2019
1.3. Deaths of children and young people and the child protection system
The Committee continues to review deaths of children and young people where a child, young person, or their family has had contact with the Department for Child Protection (DCP)7, to monitor the implementation of recommendations associated with these reviews, and to analyse the number and causes of deaths.
In the 15 years from 2005 to 2019, 508 (31%) of the 1633 children and young people who died, or their families, had had contact with the child protection system in the three years prior to their deaths. Of these 508 children and young people, 244 (48%) lived in the state’s most disadvantaged areas8.
1.3.1. Infant deaths and challenges for service delivery
In February 2020, the Committee presented information to a DCP workshop about high risk infants. The presentation provided information about the deaths of infants born prematurely, as well as the sudden unexpected deaths of infants. In all of these deaths, there had been a contemporary and/or past history of family contact with the child protection system. The Committee considers such contact to be a marker of vulnerability, and analysis of the circumstances of these deaths identified some consistent risk factors. Since that presentation, the Committee has continued to gather and analyse information about similar cases, focusing on the two-year period from 2017 to 2018.
During that two-year period, 128 infants died. The families of 30 of these infants had had contact with the child protection system. Forty percent (12 of 30) died suddenly and unexpectedly. The families of the other 98 infants had had no contact with the child protection system. Only 7% (7 of 98) of these infants had died suddenly and unexpectedly.
In the same two-year period, 76 infants were born prematurely (ie, before 37 weeks gestation) and died within 28 days of birth. Of these, 10 (13%) of the infants’ families had had contact with the child protection system within the previous three years.
Six of these ten infants were born between 19 and 27 weeks gestation (ie, extreme prematurity), and eight of the ten died within 24 hours of their birth.
The risk factors common to these ten premature infants and the 12 infants who died suddenly and unexpectedly, all of whom had had contact with the child protection system, were:
- levels of socioeconomic disadvantage including residing in the state’s most disadvantaged areas, single parent households, housing and financial insecurity, and unemployment
- the presence of family and domestic violence
- parents facing significant challenges including mental health problems, poor physical health, the use of alcohol and other drugs, and a history of childhood trauma
- previous notifications to child protection services – often about incidents of domestic violence and concerns for the wellbeing of children and young people in the household.
Also present in the deaths of seven infants who died suddenly and unexpectedly were unsafe sleeping risk factors including:
- no dedicated safe sleeping place for the infant – using parents’ bed, sofas etc
- co-sleeping with parent(s) and siblings – often when parents were difficult to rouse
- breastfeeding in bed
- excess bedding, including adult size bedding, pillows
- smoking in the household
- face down/side sleeping position.
The risks to the health and wellbeing of all these infants were broad-ranging and did not necessarily arise directly from abuse and/or neglect. To mitigate these risks, all agencies providing services to infants and their families must be able to recognise vulnerability.
The challenges of working with vulnerable families are not unique to the South Australian context. A recent review of sudden unexpected infant death by the United Kingdom Child Safeguarding Practice Review Panel identified a similar set of risk factors and challenges to service provision9.
The UK study emphasised the need for multi-agency action that could provide targeted support for vulnerable families, and tailoring messages about safe sleeping within the provision of broader support strategies that recognise the challenges faced by these families.
In South Australia, the development of the Child and Family Assessment and Referral Network (CFARN) model of care has the potential to provide services for vulnerable families, which might lead to early and sustained intervention, and ultimately to better outcomes for infants and their families. It is a model that lends itself well to the assertive provision of co-ordinated, multi-agency care and support during the antenatal period and throughout infancy. The multi-agency focus of the CFARN model also provides opportunity for adapting and integrating the UK study’s ‘prevent and protect’ practice model for reducing the risk of sudden unexpected infant death.
A recent evaluation of CFARN services provided evidence that, in comparison to a group with similar family characteristics, a CFARN intervention group had fewer child protection investigations and care placements.
The Committee notes the intention to expand the reach of CFARNs into regional areas under the auspices of Child and Family Safety Networks. In the Committee’s view, if the integrity of the CFARN model of care is to be maintained, there must be an accompanying level of funding and resources.
7 The child, young person, or a member of their family must have had some form of contact with DCP or its predecessors, within three years of the incident resulting in their death.
8 As represented by postcodes within the lowest relative disadvantage SEIFA quintile within South Australia. For more information on how socioeconomic disadvantage is defined and used in this Annual Report see Section 3.1.4.
9 The Child Safeguarding Practice Review Panel, Final Report (2020) Out or routine: a review of sudden unexpected death in infancy (SUDI) in families where the children are considered at risk of significant harm. https://assets.publishing.service.gov.uk
1.4. Deaths of Aboriginal children and young people
During the period 2005 to 2019, Aboriginal children and young people constituted only 4% of the South Australian population of children and young people, but they accounted for 12% of child deaths. The rate of death for all Aboriginal children and young people who died in South Australia, was 83 deaths per 100,000. For Aboriginal children and young people who were usually resident in South Australia, the death rate was 67 deaths per 100,000 over the same period (Figure 7). This difference in rates reflects the number of children and young people with complex medical conditions who were retrieved from other states or territories for treatment in South Australian hospitals (see Section 1.2.2). The rate of death for non-Aboriginal children and young people was 28 deaths per 100,000. The rate of death for non-Aboriginal children and young people usually resident in South Australia was 27 deaths per 100,00010.
10 For information about the estimated population of Aboriginal children in South Australia see Section 3.1.3.
Figure 7: Death rate by cultural background for all children and young people, South Australia 2005–2019
Figure 8: Death rate by cultural background and socioeconomic disadvantage, South Australia 2005–2019
Figure 8 shows the death rate for Aboriginal and non-Aboriginal children and young people in each Index of Relative Socio-Economic Disadvantage quintile. The death rate for Aboriginal children and young people is significantly greater than for their non-Aboriginal peers, regardless of the level of socioeconomic disadvantage they experience. For example, the death rate for Aboriginal children and young people living in the most disadvantaged areas is twice that of non-Aboriginal children and young people living in those same areas, and this discrepancy is similar in less disadvantaged areas. Note that the death rate for Aboriginal children and young people in the least disadvantaged areas has not been calculated because fewer than three deaths were recorded.
The factors contributing to the discrepancy in death rates within disadvantage levels are unclear. The Committee will await further data and explore this important issue in more depth in a future blog post.
1.4.1. Aboriginal children and young people – care by informal arrangement
A case that came to the Committee’s attention was also the subject of a Coronial Inquest which concluded in 2019, meaning that the Committee could not undertake its own review until coronial findings had been made.
As the Coroner has made a comprehensive examination of the issues that resulted in this young girl’s death, the Committee will not repeat this work. However, the Committee is concerned about issues mentioned in the files and Inquest, about which, no findings or recommendations were made.
This young Aboriginal girl went to non-Aboriginal carers by ‘private arrangement’, when only days old. The child protection system noted a long history of concerns for the carer regarding the often 9 to 12 Aboriginal children who resided with her – all of whom allegedly had some form of disability including intellectual disability, learning difficulties, behavioural problems or foetal alcohol syndrome. All of the children had been placed with the carer by private or informal arrangement.
After the death of the young girl’s mother, and the subsequent death of her carer, she was placed into the care of her carer’s daughter. The Finding of Inquest into the death of this young girl questioned the legal authority of her carer to transfer the care of the young girl to her daughter, and of her daughter to subsequently transfer the care of the girl to friends of the family – albeit with the knowledge of the child protection system.
The Committee has concerns about this issue and is aware that as far back as the 1980s, the child protection system was provided with legal advice that informal care arrangements were quite lawful. However, while legal, such arrangements provide no accountability for the welfare of the child, and possibly no establishment of legal guardianship.
In addition to the legality of this young girl’s care arrangements, the Finding of Inquest queried:
- the child protection system’s policies regarding children living in informal care arrangements
- the impact, if any, of the care arrangements on this young girl’s cultural identity and her mental health status
- whether relevant Aboriginal organisations and the young girl’s Aboriginal family members were consulted about changes to her informal care arrangements.
While acknowledging the significance of these matters, the Coroner noted that they were beyond the scope of a single inquest, particularly as many of these and related issues were considered by the Child Protection Systems Royal Commission 2014-2016.
The Committee has been unable to find any specific references to care by private or informal arrangement in the report of the Royal Commission, The Life they Deserve. Similarly, the Children and Young People (Safety) Act 2017 is silent on the issue.
Under its legislation, the Committee is bound, in part, ‘to review cases in which children die or suffer serious injury with a view to identifying legislative or administrative means of preventing similar cases of death or serious injury in the future’.
Accordingly, the Committee intends to examine the issue further. It has been a feature of several other cases that have come to the Committee’s attention.
In the interests of ensuring the rights and safety of children and young people, the Committee will consider, among other things:
- South Australia’s position on the issue of children and young people living under informal care arrangements
- the need for policy development on the issue
- the regulation of such arrangements
- the involvement of Aboriginal community-controlled organisations.
1.5. Deaths of children and young people with disability
Information about the deaths of all children and young people in South Australia is reviewed by the Committee to determine whether a child or young person’s daily activities had been significantly limited by disability, and to explore connections between the disability and their subsequent death.
1.5.1. A review into the deaths of children and young people placed in the care of others
In the Committee’s view, all children and young people, when placed in the care of others, are entitled to be kept safe and to have their needs understood and met. This entitlement should be the key consideration in all episodes of care, care arrangements or contracts for care arrangements. In its current review, the Committee chose five cases, both historical and contemporary, to illustrate the issues that can arise when children or young people with disability are placed in the care of a person(s) other than their parent and/or primary carer(s). The deaths of these five children may have been prevented if:
- the care needs of each child or young person had been fully disclosed, and adequately documented, so that the best possible decision could be made about the type and level of care they required
- the care needs of each child or young person had been placed before the needs of the system, the facility, the parents and/or the primary carers
- the needs of the system, the facility, the parents and/or the primary carers did not impede a decision that was in the best interests of the child or young person.
The Committee concluded that, to prevent such deaths from occurring, the quality and safety standards governing the practices of agencies who provide care for children with disabilities, must ensure that:
- Information required from parents reflects the most up-to-date knowledge about the child or young person, including the symptoms of their disability that require management – either medical or behavioural – and the signs that these symptoms might require some kind of intervention. It is important that this information is:
- written in a manner that is easy to understand and is readily available to care workers across various shifts
- continually updated and exchanged, and a review generated every three months or when there is a significant change to the child or young person’s health status or behaviours.
- Assessment takes into account:
- the child or young person’s mental health and emotional needs, eg, will placement at a different facility cause this child or young person a level of anxiety that might increase the severity or frequency of certain medical or behavioural conditions?
- will there be an increase in the frequency and severity of seizures, or of ‘comfort’ behaviours such as ingesting foreign substances in an unfamiliar environment? If so, then additional levels of supervision should be employed.
- A decision to provide care for a child or young person is based on a careful evaluation of their needs and the ability of a facility to accommodate those needs, in terms of the level of staffing, the experience and training of staff, the physical amenities of the facility, and the available equipment.
- The care provider accepts responsibility for ensuring the parent fully understands the level of care that will be provided to the child or young person, and will alert them to any matter, eg, staffing or equipment, that may pose risks to the child. Only then can parents and/or primary carers and care-providers make informed decisions about the provision of care.
- The child or young person is receiving the level and quality of care they require and:
- the facility responsible for that care has an up-to-date, documented care plan which includes the levels of care the child will receive (including overnight care)
- this plan is provided to, and signed by, the child or young person’s parent and/or primary carer. Updated information or changes (eg, arising from a meeting between the parent and/or primary carer and care-provider(s)) must be noted in the plan, and agreed to and signed by the parent and/or primary carer and the facility.
The Committee is seeking to meet with state and national agencies which hold responsibilities for the safety and wellbeing of children and young people with disabilities, with the intention of discussing the best ways in which these recommendations can be incorporated into current quality and safety standards.
1.6. Deaths of children and young people from families with culturally and linguistically diverse backgrounds
The Committee has noted the deaths of children and young people in families with culturally and linguistically diverse (CALD) backgrounds. Cultural and linguistic diversity is interpreted by the Committee to include humanitarian migration status (refugee), migrant status, and a culturally or linguistically diverse background.
Families with a CALD background have knowledge, resilience and strengths that enable sound parenting. However, the experience of migration has been found to be stressful. It may include lack of social support, lack of contact with extended family, and linguistic difficulties11. In addition, some families may also have had the experience of humanitarian migration. The Australian longitudinal study, Building a New Life, found that humanitarian migrants had experienced traumatic events including war, persecution, extreme living conditions, imprisonment or kidnapping, and natural disasters. Almost half of those people were at moderate or high risk of psychological distress12.
A linkage analysis of neonatal deaths (deaths of infants up to 28 days of age) between 2005 and 2017, was conducted in 2019 with data obtained from Wellbeing SA’s Pregnancy Outcome Unit (POU). The analysis showed that only 20% of the deaths identified by POU as occurring within families with a CALD background were identified as such on the Committee’s database.
The Committee reviewed the deaths of 28 children and young people that occurred between 2014 and 2018, where the child or young person had been identified as living in a family with a culturally and linguistically diverse background. The Committee identified factors associated with migration, language and cultural diversity in the child or young person’s circumstances of death (see Diagram 1).
The Committee will continue to incorporate information about CALD background in the information it collects about the circumstances of a child or young person’s death.
11 The Parliament of the Commonwealth of Australia. Inquiry into migration and multiculturalism in Australia. Joint Standing Committee on Migration. March 2013 Canberra. Commonwealth of Australia.
12 Jenkinson, R, Silbert, M, De Maio, J. Settlement experiences of recently arrived humanitarian migrants. 2016 Accessed on 21 June 2019 https://aifs.gov.au
Diagram 1: Review of 28 deaths of children and young people in families with culturally and linguistically diverse backgrounds
1.7. Infant mortality
Of the 1633 children and young people who died in South Australia between 2005 and 2019, 925 (57%) were infants under one year of age.
Figure 9: Death rate per 10,000 live births by year of death and sex, for infants, South Australia 2005–2019
In 2019, the Committee recorded the lowest number of infant deaths and the lowest infant death rate for the past 15 years. The Committee will await information about 2020 infant deaths before considering reasons for this decrease in numbers.
Figure 11 shows that the highest death rate occurred in the Far North region. However, from the perspective of service delivery, it is important to note that the highest number of deaths occurred in the Northern Adelaide region.
1.8. Deaths from illness or disease
The deaths of children and young people from illness or disease consistently account for over half the total number of deaths in any year.
1.8.1. A review into the death of a young person with chronic illness in lifelong circumstances of neglect of her medical care
In determining medical neglect, Boos and Fortin (2014) state that: ‘Medical neglect occurs when children are harmed or placed at significant risk of harm by gaps in their medical care. This is most likely to occur and to be recognized when families lack resources, commonly due to poverty, and when medical demands are high, such as with complex, severe, and chronic illness’13.
A young person with chronic illness, who was the subject of this review, died as a result of medical neglect, as defined above. She had been diagnosed early in life with a well known condition, which while life shortening, is more usually fatal in mid-life. Her life story exemplified what can happen when a service loses focus on a person who is at the heart of its business.
The young person experienced repeated admissions to hospital, ultimately spending almost 20% of her life in hospital. She also experienced educational neglect, being absent from school for over two thirds of each school year in the last five years of her life. The family’s circumstances included drug use, domestic violence, and multiple relocations of their household, which limited its ability to provide for her complex daily care needs.
Most service activity occurred in response to crises. Community-based support services actively promoted by SA Health and DCP were often not taken up by the family. Multiple notifications were made to DCP, but frequently no action was taken. The Committee commends individual service providers who made significant efforts to stay connected to the family for the young person’s health benefit. However, records show that her health only improved on extended admission to hospital.
Towards the end of her life, palliative care services worked to acknowledge her voice and views, enabling her to become an active participant in decisions about her life.
Previous reviews have documented the challenges for services in providing effective outcomes for children and young people who live with complex care needs in difficult family circumstances. All but one of the recommendations made in this review reflect recommendations made in earlier reviews.
The Committee will use the following recommendations as a basis for its proposed discussions with SA Health, the Department for Child Protection, the Department of Human Services (DHS) and the Department for Education (DE) regarding their responses to children and young people with lifelong complex care needs who live in difficult family circumstances.
13 Boos SC, Fortin K Medical Neglect. Paediatr Ann. 2014;43(11):e253-e259. Doi:10.3928/00904481-20141022-08.
Recommendation 1 - Parenting capacity assessment
Parenting capacity assessments be undertaken where either health services or child protection services have significant concerns about the capacity of a family to manage a child’s complex care needs.
Recommendation 2 - Lifetime cost of care
Service systems to work together to provide the most cost-effective care over the life course of the child, particularly where life-long disability and chronic health conditions are identified.
Recommendation 3 – Generalist medical leadership
SA Health to examine the benefits of generalist medical leadership in medical care to children with complex chronic disease. Such generalist care would incorporate a holistic view of the child’s circumstances and interprofessional working relationships.
Recommendation 4 – Team Around the Child
The Committee recommends:
Recommendation 5 – Assertive case management
The DCP and DHS’ Child and Family Intensive Support System must respond to cases of serious neglect with leadership of a long-term integrated service response. That is, they are to maintain an assertive case management function across all services involved with the child, and set time frames for:
Recommendation 6 – The child’s voice
Consultation with the child experiencing chronic illness is an essential element in planning for the care of each child or young person with complex care needs.
1.8.2. Chronic disease management in children and young people
In 2021, SA Health will release the Women’s, Child and Youth Health Plan 2020–2030, which will provide policy direction for health services that will include the needs of families with children and young people who have long-term complex care requirements. The Committee will review the recommendations it makes for children and young people with long-term chronic disease and complex care needs in light of the new SA Health Plan.
1.8.3. Manner of death
Palliation, either planned or in response to an acute need, or withdrawal or withholding of life-sustaining treatment may be considered when life is limited in quantity, quality or the child is unable to benefit from continued life14. The decision to limit further treatment is made in the child or young person’s best interests and, where possible, in consultation with family or caregivers.
Circumstances which might give rise to withdrawal of life-sustaining treatment were described by the United Kingdom Royal College of Paediatrics and Child Health (RCPCH)15 and included:
- brain stem death
- imminent death where further treatment is not effective in influencing physiological deterioration
- inevitable death where further treatment will not benefit the child
- where further treatment may prolong life but not provide significant benefit to quality of life
- where further treatment may cause pain and suffering greater than any benefit to the child
- where the child’s condition causes pain and suffering that outweighs the benefit of lengthening life through treatment
- the child cannot derive benefit from a lengthened life
- informed competent refusal of treatment.
The Committee has a unique data collection comprising all deaths of children and young people between the age of 0 and 17 years in South Australia. It is well placed to document changes to the way in which the deaths of children and young people are managed.
Based on the RCPCH description of circumstances in which life-sustaining treatment might be withdrawn, the Committee developed a schema to categorise the manner of all child deaths in South Australia (See Diagram 2). Categories are:
- no opportunity to palliate
- a planned palliation approach is in place, or life-sustaining treatment is withheld
- treatment is initially active but redirected to palliative care after discussion with the family
- unknown manner of death.
In 2021, the Committee will discuss its findings with health professionals providing end-of-life care.
Diagram 2: Schema to categorise manner of death
14 & 15Larcher, V., Craig, F., Bhogal, K., Wilkinson, D., Brierly J., Royal College of Paediatrics and Child Health, Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch. Dis, Child. 2015: 100 Suppl 2: s3-23.
1.9. Deaths from external causes
Deaths from external causes include those deaths that the Committee has classified as being transport-related, by suicide, due to drowning, a deliberate act by another person, fire-related, accidents (falls, suffocation and asphyxiation, poisoning), neglect, and medical misadventure.
1.9.1. Deaths of children aged 0 to 12 years who were passengers in transport crashes, 2005–2018
The risk of injury or death of a passenger in a vehicle collision is significantly reduced when that person is properly restrained. To safely use an adult seatbelt, a person must be at least 145 cm tall. Children who have not reached this height must use an appropriate-for-size child safety seat or booster seat to ensure that they are safely restrained.
Australian law requires that children aged up to 7 years be seated in an approved child safety seat when travelling in a vehicle. Children aged 7 years and over must be seated either in an approved child safety or booster seat, or use a seatbelt that is properly adjusted and fastened, depending on their size.
Unfortunately, some confusion may exist among parents regarding the appropriate time to transition their child to an adult seatbelt. Although the law suggests that a child may be able to transition safely at 7 years of age, most children cannot safely use an adult seatbelt until the ages of 10 to 12 years – indeed, by age 10, only around 10% of Australian children have reached a height of 145 cm.
In South Australia, between 2005 and 2018, 38 children aged 0 to 12 years died while passengers in a vehicle. Sixty-one percent (24) of these children were not appropriately restrained, including 9 children who were unrestrained.
Of these 24 children, almost half (11), were aged 8 to 12 years and seated in an adult seat despite being less than 145 cm tall (the tallest child was 140 cm).