Supporting children with disability in out-of-home care (OOHC)

Introduction

It is important that professionals working with children in care understand the relationship between disability, out-of-home care (OOHC) experiences, and other social and health outcomes so that they can provide comprehensive and appropriate support. This resource briefly describes some of the intersections between disability and OOHC experiences and outcomes. It also outlines some implications for professionals supporting children with disability in care.

Intersections between disability and out-of-home care

Research consistently indicates that children with disability experience an increased risk for maltreatment, family violence, and other adverse childhood experiences (ACEs) compared to children without disability (Burns et al., 2021; Hatzikiriakidis et al., 2021; Shannon et al., 2023). Consequently, children with disability are more likely to experience contact with child protection services and to be placed in OOHC (Jones et al., 2012; Maclean et al., 2017).

Although there is broad agreement that children with disability are over-represented in OOHC, estimating the prevalence of disability among children in care is difficult. This is due in part to incomplete administrative data on disability status for children in OOHC, and inconsistent definitions of disability used across jurisdictions¹ (Hatzikiriakidis et al., 2021; Jackson et al., 2015; McDowall, 2018).

As disability is a multidimensional and complex concept, differences may exist across jurisdictions in how disability is defined. There are also differences in how information about disability is captured in jurisdictional processes and client information systems (AIHW, 2021).

Only about three-quarters (71%) of Australian children in OOHC have administrative data recorded about their disability status (AIHW, 2023). Nonetheless, of the children for whom there is disability data, close to a third (29%) have a recorded disability of some kind (AIHW, 2023). In contrast, approximately 7.6% of children (aged 0–14 years) in Australia have a disability (AIHW, 2020). Given the gaps in reporting on disability status, there is also evidence to suggest that this underestimates the true number of children with disability in OOHC (CREATE Foundation, 2012; Hopkins et al., 2021).

Research that has explored the extent of disability in care indicates that intellectual and developmental disabilities are particularly common (Greig et al., 2019; Jackson et al., 2015; Maclean et al., 2017; McDowall, 2018). For example, children with intellectual disabilities and/or autism spectrum disorder (ASD) are twice as likely to be in OOHC than children without disability (Cidav et al., 2018; Shannon et al., 2023). There is also some evidence to suggest that attention deficit hyperactivity disorder (ADHD), learning disorders, and developmental delays² are more common in children in OOHC than in the general population (AIFS et al., 2015; Baldwin et al., 2019; CREATE Foundation, 2012).

Wellbeing outcomes of children with disability in out-of-home care

Despite children with disability being highly represented in OOHC, there has been limited research on their wellbeing outcomes during and after care (Walsh et al., 2018). However, existing research indicates that children with disability have an elevated risk for maltreatment within care, especially sexual abuse (Euser et al., 2016; Maclean et al., 2017; Shannon et al., 2023). Children with disability are also more likely to be placed in residential care; more likely to experience placement instability or placement breakdown; and less likely to achieve reunification with their birth families than children without disability (Hindmarsh et al., 2020; Shannon et al., 2023; Tournier et al., 2021).

Correlated with these experiences of maltreatment and unstable placements, children with disability experience a higher risk of developing mental health challenges in care (Baldwin et al., 2019; CREATE Foundation, 2012; Hatzikiriakidis et al., 2021). They are also more likely to experience long-term challenges when transitioning from care, including contact with the justice system (Baidawi & Piquero, 2021; Bollinger et al., 2017; Malvaso et al., 2017; McCausland & Dowse, 2022).

Barriers to support for children with disability in out-of-home care

There are significant barriers to timely and appropriate support for children with disability in OOHC (McDowall, 2018; McLean et al., 2019; Shannon et al., 2023; Tournier et al., 2021; Ziviani et al., 2012). Previous research, and some advocacy organisations, suggest that children in care do not always receive timely or appropriate physical and mental health assessments. This can also include a lack of appropriate and accurate screening for disability (CREATE Foundation, 2012; Kerns et al., 2014). The National Disability Insurance Scheme (NDIS) and the Early Childhood Approach (ECA) are intended to support children within OOHC with disability and/or developmental delays. However, children in OOHC may face barriers to timely access to services. For example, a disability diagnosis is often required for children to access services, and it can be difficult to coordinate services for children in OOHC.

Many foster carers also report insufficient training and support to adequately support children with disability in their care (AIFS et al., 2015). Foster and kinship carers of children with disability often experience stress, exhaustion and financial stress, which may negatively impact their ability to provide support and care (AIFS et al., 2015; Smart et al., 2022).

Children with disability who occupy other minority or marginalised groups may experience further marginalisation and barriers to care. For example, Aboriginal and Torres Strait Islander children with disability in care are less likely to have their health and mental health needs met than non-Indigenous children (Hopkins et al., 2021; Raman et al., 2011; Raman et al., 2017).

Implications for practice

Presently, there is limited evidence on best practice approaches to supporting children with disability in OOHC, due in part to a limited number of high-quality studies (Ziviani et al., 2012). However, existing evidence suggests that several recognised approaches for working with children with disability and complex needs in the wider population are also relevant for children in OOHC (Sege & Amaya-Jackson, 2017; Smart et al., 2022). These include trauma-informed care, multi-faceted and holistic approaches, culturally appropriate support, and strengths-based approaches (Hatzikiriakidis et al., 2021; Jackson et al., 2015; Ziviani et al., 2012). There is also a need for positive behavioural support for children with behaviours of concern (Bristow et al., 2022; Cortis et al., 2023). These behavioural support approaches should follow NDIS regulations – for example on the use of restrictive practice³ (NDIS Quality and Safeguards Commission, 2021).

Practitioners can support children with disability in OOHC by using child-centred approaches, actively involving children in decisions about their health care, and collaborating with carers and other professionals to provide tailored support to address the child’s specific needs and care history (Watson, 2023; Ziviani et al., 2012; Smart et al., 2022).

Foster and kinship carers of children with disability may require specialised training and education to ensure they can provide appropriate care for the child, in addition to needing social support and respite to maintain their own health and wellbeing (Hatzikiriakidis et al., 2021; Shannon et al., 2023; Smart et al., 2022).

Conclusion

Children with disability experience elevated risks of maltreatment and are more likely to be placed in OOHC. They also have a higher likelihood of adverse outcomes within OOHC than children without disability. Currently, however, the accuracy and completeness of administrative data about disability among children in care is limited. Therefore, there is a need to improve data collection on the number of children with disability in OOHC in Australia. Additionally, more research is needed to build the evidence-base for best practice approaches to supporting children with disability in care.

1. Disability is a complex, multifaceted concept that may encompass a range of physical, sensory, cognitive and/or psychological differences. It is important to note that common definitions of disability vary, and may or may not include a vulnerability to mental health challenges, behavioural problems, and developmental delays. Children in care are more likely to experience mental health challenges, cognitive and developmental delays, and to have complex needs, and the distinction between each of these is not always clear (Baldwin et al., 2019; Engler et al., 2022).

2. Developmental delay refers to a delay in children’s development in one or more areas including motor development, speech and language, cognitive or intellectual development, or social and emotional development, compared to children of a similar age. Developmental delays can be temporary or persistent – persistent developmental delays may be considered disorders and be caused by other conditions, including disability.

3. Restrictive practices include any action that restricts movement or freedom of a person, including physical, environmental, chemical restraint, and seclusion.

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