From the frying pan into the fire: the risks for "hidden" children with disability in out of home care data, support

Children with disability may make up the majority of those in out of home care, yet they are barely visible in public debate and policy development, writes Dr Jess Cadwallader from People with Disability Australia. In fact, she says the recent National Standards for Out of Home Care contain zero guidance in relation to disability. She argues that a critical starting point to providing proper care for them is to at least collect basic and crucial data.

If we are taking children from their families in order to keep them safe, we need to be sure that where they wind up is better and safer. Yet despite a growing focus on issues for children in out of home care across mainstream media, numerous inquiries and policy initiatives, one cohort remains hidden from the discussion. 

Children with disability are massively overrepresented, perhaps even representing a majority of children, in out of home care. They are also at higher risk of violence, and may be missing out of getting the support they need. So why aren't they at the centre of this conversation?

International studies of similar jurisdictions show that children with disability are at 3.4 times the risk of violence compared with other children [PDF]. 

Some of this violence occurs in the family home. A child's disability is problematically characterised in national policy documents such as the National Framework [PDF], as a 'risk factor' for family breakdown and domestic violence. Swap 'disability' for any other minority demographic - race, cultural background, gender or sexuality - to clarify how victim-blaming this characterisation is. Family violence against a child with disability may be one reason why they end up overrepresented in out of home care.

The child's disability being treated as a risk factor also obscures the inadequacy of the disability support system and its impact on families. We know that difficulties in fulfilling a child's support needs can lead some families to 'voluntary relinquishment' of their children with disability into out of home care.

The other factor leading to the overrepresentation of children with disability in out of home care is the impact of violence itself. It is increasingly recognised that family and domestic violence, even when directed against a parent rather than a child, have serious impacts on that child. These impacts vary particularly with the stage of development, but trauma is associated with psychosocial disability arising from a range of mental illness, including post traumatic stress disorder and anxiety disorders.

Surely such risks and outcomes are the focus of major scrutiny? Unfortunately, there's no robust national data. This means advocacy is easily dismissed, and there can be no evidence-based policy developed. Even large inquiries like the Royal Commission into Institutional Responses to Child Sexual Abuse are ham-strung by the lack of data [see pp. 18-19].

Where are the gaps in our data?

There are various bits and pieces of data about the overrepresentation of children with disability in out of home care. In 2005, Melbourne’s Royal Children's Hospital Mental Health Service reported that at least two thirds of children in out of home care had some kind of mental illness. In 2008, Nicole Milburn found over 60% of children in out of home care met criteria for a major psychiatric diagnosis. In 2014, Anglicare Victoria reported that 63 per cent of children in out of home care [PDF] experienced chronic health problems or disability.

That would mean that the majority of children in out of home care have disability. But nationally, and officially, we don't know for sure, and the various policy frameworks attempting to improve out of home care reflect that gap in knowledge. Why don't we know?

Well, this gap is particular to children with disability. The Australian Institute for Health and Welfare (AIHW) reports annually on children in the child protection system using the Child Protection National Minimum Data Set (CP NMDS). The Child Protection Australia (CPA) reports are based on administrative data collected from each of the states and territories, and include an extraordinary range of detail about children in out of home care.

But not disability. In one of very few disability-focused 'Actions' in the three Action Plans of the National Framework [link], AIHW was directed to improve the quality of the CP NMDS data. It was directed particularly to address the inadequacies of data in relation to Aboriginal and Torres Strait Islander children and children with disability. The CPA reports now include fairly robust data about Aboriginal and Torres Strait Islander children, but despite implying that disaggregation by disability had been enabled by enhancements to the CP NMDS in a report on the topic released in 2013, neither the 2013-14 nor the 2014-15 CPA reports include any discussion of disability, let alone disaggregated data.

One of the difficulties with collecting such data about disability, allegedly, is that various jurisdictions define disability in different ways which cannot be compared and contrasted to each other. This might be true, but this would be a fairly standard caveat that could be placed on the data, while still giving us an approximation. It may, indeed, enable us to address where the definition used by some jurisdictions may better enable recognition of the support needs of children in out of home care. Given that a variety of definitions have not been a hurdle in relation to the Disability Services National Minimum Data Set, also managed by AIHW, it isn’t clear why this is a difficulty when it comes to children in out of home care. Alternatively, there could be an expanded use of the World Health Organisation definition, which is already in use in many Australian jurisdictions.

An additional problem is about where funding comes from. Some children with disability may wind up in placements funded by the government agency for disability services instead of child protection. This potentially excludes them from the scope of the CPA report (see p. 48).

Another difficulty is that because these reports are working with administrative data. Forms may not be fully filled in, or children may have disability that is not recognised, and thus it doesn't make it into the data. However, like the harmonisation of definitions of disability, these difficulties can be addressed at the front line, given adequate commitment. The inclusion of data about Aboriginal and Torres Strait Islander children in the reports clearly demonstrates that the amendments to data collection in the CP NMDS have addressed whatever concerns about data reliability may have prevented reporting that data previously.

What does this say about care?

But this lack of administrative data may reflect another problem; a problem regarding the adequacy of the care children with disability receive in out of home care. Child protection systems are not particularly good at recognising disability and ensuring the fulfilment of support needs. This is reflected, rather than addressed, in the recent National Standards for Out of Home Care [PDF] which contain zero guidance in relation to disability. 

There are perverse incentives built into a child protection system that tended to divide children up on the basis of disability [PDF]. Children whose disability is recognised may tend to be streamed into less homelike forms of out of home care, like residential care or even disability institutions. These are generally understood to be inferior for child development compared to homelike settings such as foster care. Resi care, especially in disability-specific settings, can break down a child's existing support networks, isolating them and putting them at higher risks of further violence. Child protection workers may think those children with more limited support needs are better off in foster care, even if their support needs are not addressed. 

This, however, can mean that these kids are at higher risk of violence (amongst many other poor outcomes) as they may find it difficult to disclose without these support needs being addressed. Without access to adequate communications supports, for example, a child with communication needs may not be able to express what has happened to them. Additionally, if foster families are unaware of a child’s disability, they may interpret certain behaviours as naughtiness, recalcitrance or anti-social, when it is an expression of trauma. 

Even with the data problems, we do have some information indicating that children with disability experience disproportionate rates of violence in out of home care. The NSW Ombudsman has found that although it is estimated that children with disability make up only 12 per cent of children in out of home care in NSW, they represent 36% of those who are subjects of reportable conduct reports in out of home care [PDF]. 

Additionally, cases involving children with disability represent only 6% of those cases leading to criminal charges, reflecting the ongoing barriers to justice experienced by children with disability. This is turn means they are more likely to be targeted by perpetrators seeking to avoid conviction, some of whom deliberately seek to become foster carers or out of home care workers. 

We only know this in NSW because a Reportable Conduct Scheme already exists in this jurisdiction. With COAG's commitment to exploring the 'harmonisation' of such schemes across Australia, the adequacy of the Child Protection Australia reports becomes essential to allowing us to establish the prevalence not only of disability amongst children in out of home care, but the prevalence of violence against this cohort while they are the responsibility of the state. 

Children with disability are often removed from their families and placed in out of home care either because they are subject to or exposed to violence, abuse and neglect, or because of the failures of the existing support system. As a society, we have an obligation to ensure that these children aren't forced from the frying pan into the fire by our child protection systems. We need to be sure that out of home care keeps children with disability safe - and it can only do that if we respond adequately to their support needs. All of this starts with basic data collection about the number of kids with disability in out of home care.

Dr Jess Cadwallader is Advocacy Projects Manager, Violence Prevention, for People with Disability Australia. She tweets at @JessPWDA .