Improving safety at home: responding to violence, abuse, and neglect of people with intellectual disabilities across environments and settings

Abstract

The Final Report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has heightened national focus on the experiences of people with disabilities. The Commission made important progress in recognising that violence, abuse and neglect occurs in all the places that people live their lives. Attention is now on how governments and communities will prevent and respond to entrenched and difficult problems. The recommendations may not go far enough to dismantle the siloed approaches that cause abuse and make it difficult to respond effectively for people with intellectual disabilities, who face particular barriers. This article uses research on domestic and family violence experienced by children and young people with intellectual disabilities to illustrate this risk. Without transformative responses by governments and communities, the systems and structures that enable violence and abuse across sectors will not be adequately addressed.

Keywords:

• Children and young people
• disability policy
• cross-jurisdictional
• intersectionality
• Disability Royal Commission; intellectual disability

This article considers how the Final Report of the Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability (the Commission) approaches the violence, abuse, neglect, and exploitation that happen across and between different environments and settings (Commonwealth of Australia [CoA], 2023c, 29 September). It asks whether the Commission’s Report gives adequate consideration to how transformative change can be practically implemented in ways that make the lives of people with intellectual disabilities safer across our communities and social structures. The article uses domestic and family violence as a case example, drawing on data from research about the experience of children and young people with disabilities, primarily intellectual disabilities or other cognitive disabilities such as autism or acquired brain injury (Jones et al., 2023; Robinson et al., 2022, 2023), and focuses particularly on issues that matter to people with intellectual disabilities and the people who support them. There is “slippage” between issues that matter to everyone with disabilities, and issues that are important mainly to people with intellectual disabilities—it is not easy to divide these issues up. However, looking through a lens that considers the interests of people with intellectual disabilities in domestic and family violence raises some uncomfortable questions about how broadly the Commission has framed “home” for people with intellectual disabilities and considered what will help make their home a safer place.

For this article, I draw on recent research conducted at Flinders University, South Australia, into the experiences of children and young people with cognitive disabilities subjected to domestic and family violence (Robinson et al., 2022, 2023), as well as on research conducted for the Commission (Jones et al., 2023), to illustrate the full scale of this issue and to inform commentary on how existing approaches to violence prevention and responses to actual acts of violence against people with intellectual disabilities might be broadened. This question becomes even more pressing when considered through an intersectional lens and engages with ideas about complexity, power, and identity in important ways. Intersectionality describes the effects on people of living with multiple and compounding experiences of oppression (Crenshaw, 2017; Shaw et al., 2012). These disadvantages can arise for many reasons, including systemic failures to meet people’s needs (e.g., discriminatory education or housing systems), inappropriate responses from agencies and services, inadequate capacity of services to respond to people’s needs with necessary skills and knowledge, and organisational constraints around resources, models of service provision, and capacity of systems (Shaw et al., 2012; Stubbs, 2015).

Most people with intellectual disabilities do not think of themselves primarily as service users. Intellectual disability is just one part of who they are. Their age, gender, location, culture, and class have an intersecting effect on their identity well beyond the effects of their disabilities. For example, a young Aboriginal woman from rural South Australia will have different expectations and experiences from a non-binary person in inner city New South Wales, or an older Anglo-Saxon man living in poverty in regional Victoria. The Commission’s Final Report gave some attention to intersectionality, drawing attention to the findings and recommendations about domestic and family violence and disability as an example of its intersectional approach (Commonwealth of Australia (CoA), 2023b, September, Executive Summary, p. xiii), but it did not apply this lens to its findings widely.

What did the Royal Commission say?

Approach of the Commission’s Final Report

Overall, the Commission’s Final Report takes a human rights approach, which means asking what a person needs to live a life of dignity and respect, and to achieve inclusion (CoA, 2023c, 29 September, Vol. 4). The report lays out a vision and ideas about improving attitudes and preventing and acting on discrimination, which are important for everyone, but resonate in particular ways for people with intellectual disabilities. People with intellectual disabilities are subject to many practices that are not part of the everyday experience of other people, but which have become norms in service provision and community expectations. These include segregation, restrictive practices, and substitute decision-making (Kayess & Sands, 2020). Much of the Commission’s attention in the report is on these critical issues. However, there is a tension in the Final Report about how thoroughly human rights principles are enacted. A fundamental challenge for the field is in moving from the big picture that the Commission has articulated very well in its research programme (Clifton, 2020; Hallahan, 2021; Kayess & Sands, 2020) to a practical framework for generating solutions that improve the world for people with disabilities. How do we make it counter-cultural for violence and abuse to happen, so people act on it when they see it, or see the risk of it happening?

What evidence did the Commission collect to support the recommendations relating to domestic and family violence?

Violence, abuse, and neglect experienced at home were included in the remit of the Commission’s investigation. During its operation, the Commission held one hearing about the domestic and family violence experiences of women and girls with disabilities (CoA, 2023a, 2019–2023 [Hearing 17, transcripts, 13–14 October, 2021; 28 March–1 April 2022]). In this hearing, evidence provided to the Commission was much broader in scope than the Final Report would indicate (CoA, 2023c, 29 September, Vol. 8) (at least at this point in digesting the volumes). Witnesses provided evidence about the causes and effects of domestic and family violence, the impact of the lack of access to crisis and support services, the need for capacity building across different sectors, restrictions to the sexual and reproductive rights of women with disabilities, and the impact of child removal. Multiple narratives in the three books comprising Volume 1 of the Final Report, “Voices of people with disability” share de-identified accounts of domestic and family violence provided to the Commission (CoA, 2023c, 29 September, Vol. 1, Books 1–3). Many of the other hearings and submissions across the course of the Commission’s proceedings also included reference to violence, abuse, and neglect at home. This is, for the most part, not presented through the lens of domestic or family violence, but rather presented through a sector-specific focus on issues such as resident-to-resident abuse in group homes (CoA, 2020, 30 September, Hearing Report 3), investigations of the ways that disability services manage allegations of abuse (CoA, 2019–2023 [Hearing 13, transcripts, 24–28 May 2021; Hearing 14, transcripts, 7–11 June 2021; & Hearing 20, transcripts, 7–14 December, 2021]), and violence and abuse experienced by students with disabilities in schools (CoA, 2019–2023 [Hearing 24, transcripts, 6–10 June 2022]).

Research was conducted for the Commission into the experiences of domestic and family violence by First Nations women and children with disabilities (Jones et al., 2023). Their research showed that a context of intergenerational trauma and the lack of safety for women and children with disabilities had a major impact on these children’s and women’s lives. Children experienced challenges with social and emotional regulation, bullying, and unresponsiveness in education systems. Mothers and children lacked access to culturally safe domestic and family violence, disability, and health services. Housing and homelessness, racism, child removal, and punitive experiences with police all contributed to a climate in which access to and support from services across these sectors were fragmented, unreliable, and little trusted.

What did the Commission’s Final Report say about domestic and family violence?

The Final Report of the Commission had comparatively little to say about domestic and family violence, given the scale of these experiences for people with disabilities. Although it acknowledged that “violence against and abuse of women and girls predominantly occurs within family and domestic contexts” (CoA, 2023b, September, Executive Summary, p. 48), there is surprisingly little focus on responding to this violence and abuse, or on the cross-governmental and community implications for responding to it differently. Much of the Commission’s attention in the Final Report was on the experiences of, responses to, and prevention of violence, abuse, neglect, and exploitation in specific settings; namely, disability services of various kinds, schools, corrective services, health, and housing. These service settings are all very important for improving the lives of the many people with intellectual disabilities, who have been, and continue to be subject to violence and abuse in these settings. However, most people, with and without intellectual disabilities, move between and across multiple systems and service settings, where they rely on the connections between practitioners, services, and systems for effective service provision, including support when they experience violence and abuse. People with intellectual disabilities may be even more reliant on practitioners in those systems and settings to advocate on their behalf for their needs, particularly in times of crisis. Preventing and responding to violence, abuse, or neglect requires moving beyond thinking of people as service users, primarily located in one domain or another, towards approaches that anticipate and expect disabilities as part of the diversity of communities, and to resource and upskill across systems and services accordingly (Lawson & Beckett, 2021).

The primary content relating to domestic and family violence in the Final Report (CoA, 2023c, 29 September, Vol. 8) is focused on “acknowledging disability and domestic and family violence in law and policy” (p. 14), and the emphasis is on improving existing domestic violence policy. The Commission’s recommendations for change in this space centre on improving police responses to people with disabilities (CoA, 2023c, 29 September, Rec. 8.20), amending legislative definitions of domestic and family violence to be inclusive of the diverse domestic relationships and situations of people with disabilities (CoA, 2023c, 29 September, Rec. 8.24), and strengthening the policy response to disability. Recommendation 8.23 (CoA, 2023c, 29 September) focuses on adding an action plan to the National Plan to End Violence against Women and Children 2022–2032 (CoA, Department of Social Services, 2022), which is co-designed, coordinates with other relevant plans, and includes comprehensive actions and resources to address prevention, early intervention (in violence), response, and recovery and healing.

There are multiple recommendations that are relevant to making positive change in this domain, particularly around standardising the role of safeguarding bodies in each state and territory, and additional independent pathways for oversight and complaints (CoA, 2023c, 29 September, Rec. 11). This includes a “one-stop-shop” approach for people to be able to seek advice and information about their options for reporting violence or abuse against a person with disability and to receive warm referral to appropriate agencies (CoA, 2023c, 29 September, Rec. 11.3). This is particularly important owing to the high levels of stigma, shame, and fear that surround domestic and family violence. Improving the rigour of community visitor and reportable conduct schemes are critical recommendations for people with intellectual disabilities, who may not be able to activate their own complaints. The recommendation to develop a national safeguarding framework to collect and report data on violence, abuse, neglect, and exploitation in a wide range of contexts, including private homes and public places (CoA, 2023c, 29 September, Rec. 12.5), is welcome, but relies on robust implementation of many other recommendations for there to be useful data to collect.

The foundational recommendations are also important here, even if less explicit about their connection to violence at home and people with intellectual disabilities. The Commission recognises that existing frameworks are insufficient, and recommends that the Australian Government commit to the enactment of a Disability Rights Act to articulate the human rights of people with disabilities in Commonwealth law (CoA, 2023c, 29 September, Recs. 4.1 − 4.21). Mechanisms within the Act would inform Commonwealth laws, policies, and systems and structures so that the human rights of people with disabilities can be promoted and protected in practice. Alongside this are recommendations for a new National Disability Commission to support implementation and compliance with the Act, and to shift the burden of enforcing the law away from individuals (CoA, 2023c, 29 September, Recs. 4.18–4.21). States and territories should enact complementary legislation that accounts for their legal frameworks and responsibilities (CoA, 2023c, 29 September, Rec. 4.22).

Commentary

The evidence gathered by the Commission is consistent with the experiences of researchers working with children and young people with disabilities who experience domestic and family violence. Children and young people with intellectual disabilities are known to experience more domestic and family violence than children and young people without disabilities, or those with other kinds of disabilities (Centre of Research Excellence in Disability and Health, 2021; Corr & Santos, 2017; Franklin & Smeaton, 2017; Jones et al., 2012). This experience can have profound ramifications across the different domains of their lives, affecting children and young people’s access to housing, education, therapies and specialist supports, and connections with friends and family. Poverty, age, gender, culture, Aboriginality, and location are all important factors that affect the ways that children and young people with intellectual disabilities experience violence at home, and the ways that services respond to them and their families (Crenshaw, 2017; Jones et al., 2023; Shaw et al., 2012).

Research led by the team at Flinders University using data linkage, case-study analysis, and qualitative research with children with disabilities and the people who support them has demonstrated that this violence is not a minority issue (Robinson et al., 2022). At a broad population level, the Australia Personal Safety Survey results showed that about 1 in 8 (13% or 2.6 million) adults witnessed domestic or family violence, or both, before the age of 15 years (Australian Institute of Health and Welfare (AIHW), 2023). This data-linkage research shows that children with disabilities who experience domestic and family violence are present across all systems at disproportionately high rates (Octoman et al., 2022). These children had double the rate of exposure to domestic and family violence compared with children without disabilities, as measured by their mothers hospitalised for assault. They made up approximately 30% of children exposed to domestic and family violence, according to police and hospitalisation data. They were also far more likely to have had child-protection involvement and entry into out-of-home care, making up approximately 32% of children involved in child protection, and 36% of children in out-of-home care. Aboriginal children with disabilities (36%) and children with disabilities in regional and remote areas (36%) were over-represented in even greater numbers in child protection and out-of-home care (Octoman et al., 2022). Case-study analysis of administrative data collected by a statutory child protection authority in one jurisdiction revealed that children directly experienced violence from domestic and family violence perpetrators and showed signs of trauma as a result of family violence, such as fear and distress, diagnoses of acute trauma, and reactive behaviour problems. Domestic and family violence negatively affected their access to services such as therapies. It was harder for families to leave homes where violence was occurring because of a lack of safe and accessible housing (Octoman et al., 2022).

Qualitative research in the Connecting the Dots research project with children and young people with disabilities (primarily intellectual and cognitive disabilities), families, and practitioners about their experience of using services in the context of domestic and family violence found an inadvertent silencing of children and young people’s voices and priorities owing to practitioners’ discomfort and inexperience in working with children and young people with support needs. It was rare to find practitioners who were skilled in the areas of disability, violence, and working with children—the three skillsets most needed. Children and young people and their families were “dropped” in the gaps in between service systems. The complexity of navigating systems, particularly National Disability Insurance Scheme (NDIS) entry, was prohibitive for families in crisis (Robinson et al., 2022, 2023). As a case example, it shows us that children and young people’s lives are not lived in silos. This is even more apparent when difficult things happen in children and families’ lives. Current systems are much too complex for families to navigate, especially at times of crisis. They need to do a much better job of supporting people across the intersections of services, and not “dropping” them between the gaps. The focus should be on children and young people as citizens, not with needs ancillary to those of their family members. In the following section, I discuss implications arising from the way that the evidence was used by the Commission in its recommendations.

Implications for change

A fervent shared hope and expectation across the communities of people with disabilities and their supporters was that the Commission would provide a clear pathway forward for making their lives safer, richer, and more inclusive. The Commission set its sights high with its recommendations for a Disability Rights Act and a framework that is pinned against the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (2006), which seeks to activate change. This high-level change has the potential to radically improve the lives of people with intellectual disabilities by raising the expectations of everyone in society in relation to their rights to be safe in the world; clarifying what they can do if they are concerned this might not be the case; and accompanied by mechanisms to drive that change by strengthening anti-discrimination, safeguarding, and monitoring approaches.

However, implementing the recommendations will be complex, detailed, and lengthy, and reliant on a network of inter-governmental agreements and relationships between many stakeholders to activate plans for improving policies and practices. Frameworks to guide action will be needed in multiple arenas to shape collective work in prevention, response, and recovery. More detailed analysis will now be needed to provide sufficient clarity for governments about the kind of actions needed to improve safety—including safety at home for people with intellectual disabilities. This analysis will need to consider all the kinds of homes, and all the kinds of violence and abuse that people with intellectual disabilities experience, in order to develop new solutions.

Recognising the impact of norms on practices

This article has focused on the experience of domestic and family violence as a form of violence, abuse, and neglect that happens across and between environments and settings, and where and how it has been represented in the Commission’s Final Report (CoA, 2023c, 29 September). However, there are different social and cultural norms surrounding domestic and family violence and abuse of people with disabilities in disability-specific settings (Maher et al., 2021). These norms set different expectations about how violence in these spaces is recognised and responded to. Media campaigns about domestic and family violence are an example of a social norm of not tolerating domestic and family violence. The absence of mainstream media campaigns about violence and abuse against people with disabilities speaks to norms about tolerating a certain level of harm. The history around these kinds of violence sets up different social and community expectations about what is an “acceptable” or “tolerable” level of harm, demonstrated by the ways in which systems and structures are organised and the rigour with which they are monitored and action taken when violence, abuse, or neglect occurs (Robinson et al., 2021). Hallahan (2021) and Clifton (2020) both pointed to the effects of this in their research for the Commission. Hallahan (2021) pointed to the deep ambivalence that runs through the history of disability in Australia to the present, fundamentally affecting both exclusion and inclusion of people with intellectual (and other) disabilities. She noted the continuation of patterns in service provision that seek to remove people with intellectual disabilities from a public gaze that is uncomfortable with difference, but that what is protective against abuse are bonded relationships of connection and community. Clifton (2020) identified how “embodied disability and intersectional complexity highlight the multifaceted nature of the causality of violence, abuse, neglect, and exploitation against people with disability [which] stands as an important reminder that solutions to disablement will not be straightforward” (p. 35). This is a helpful reminder for our context. Understanding and navigating norms—the “way we do things around here”—in both disability and domestic and family violence settings is needed to progress change in this space.

Need to draw together findings and recommendations in new ways

Across the volumes of the Final Report, there is welcome recognition of the significance of violence at home, of the impact of domestic and family violence, of the need to better acknowledge how violence, abuse, and neglect impact on children and young people with disabilities, and of the need to respond to the particular needs and circumstances of people with intellectual disabilities. By concentrating focus for action on national domestic and family violence policy, the Commission has amplified the importance of including women and children with disabilities in mainstream responses to violence and abuse. However, these needs do not appear to be drawn together in the Final Report in a way that might highlight to policymakers and practitioners how they can generate productive change across sectors. This risks the continuation of the previous siloed approaches that have failed to make the lives of people with intellectual disabilities safer and more fulfilling. For example, the need to recognise violence, abuse, and neglect in group homes, respite centres, boarding houses, and other facilities as occurring within a domestic frame is highlighted in the recommendation about changing definitions of domestic and family violence in legislation, but not carried forward into other parts of the Commission’s work, such as addressing restrictive practices, reshaping attitudes, and how we fundamentally rethink the experience of peer-to-peer violence in supported accommodation or boarding houses, where it can be endemic for people with intellectual disabilities. This is a missed opportunity, and one that carries significant risks for people with intellectual disabilities.

Perhaps one way to approach the analysis of this very large and complex Final Report is to consider the needs and priorities of groups across sectors and in different parts of the community, moving outside a sector-specific approach. We need to provide a pathway for policymakers, practitioners, and legislators by bringing together recommendations in ways that demonstrate how to practically improve people’s lives. For example, crafting supports for perpetrators of violence who lack legal capacity requires considering the human rights of both perpetrators and victims. This goes beyond legislative reform to issues such as the need for a new framework incorporating justice, policy, and practice elements.

Intersections with other policy

The Final Report of the Commission and the early implementation phase for governments come at a critical juncture for disability policy. A number of related policy imperatives were in play alongside the Commission’s work, including the Independent Review of the NDIS, Australia’s Disability Strategy (and its Action Plans), and national plans for Protecting Australia’s Children (2021–2031) and to End Violence against Women and Children (2022–2032) (CoA, Department of Social Services, 2021a, 2021b, 2022). Finding productive ways to move forward and solve the complex problems that they all identify needs coordinated action across governments for safety and inclusion to improve.

Including people with intellectual disabilities in solution-making

Across all of these plans, there has been a change in the ways in which people with intellectual disabilities are involved. It is standard good practice now to include their advice and experience, to have advisory groups, and to find ways to learn from their knowledge and ways of being. However, it is not mandatory. It is still far too easy to do this in a token way, to include people with intellectual disabilities “around the edges” of where the decisions are made. The Disability Royal Commission has exponentially increased the importance of including people with intellectual disabilities fully and accessibly. Despite the significant costs of giving testimony, many people with intellectual disabilities and the people who supported them provided evidence and submissions that gave the Commission the essential evidence on which to base its findings. People with intellectual disabilities are owed a place “at the table” for the solution-making.

Acknowledgements

Thank you to all the people who participated in our research, particularly the young people and their families.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Australia’s National Research Organisation for Women’s Safety (ANROWS).