review Living with Disability RESEARCH CENTRE Supporting inclusion of people with cognitive disabilities Literature Review of Best Practice S

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Living with
Disability
RESEARCH CENTRE
Supporting inclusion of people with cognitive disabilities

Literature Review of Best Practice

Supports in Disability Services for

the Prevention of Abuse of People

with Disability

Report for the Disability Services
Commissioner

September 2017

Tal Araten-Bergman, Christine Bigby & Gail Ritchie.

ENQUIRIES
Professor Christine Bigby
Director, Living with Disability Research Centre
La Trobe University
Victoria 3086

T 03 9479 1016
E c.bigby@latrobe.edu.au

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Suggested Citation

Araten-Bergman, T., Bigby, C., & Ritchie, G. (2017). Literature Review of Best Practice Supports in
Disability Services for the Prevention of Abuse of People with Disability. Report for the Disability
Services Commissioner. Living with Disability Research Centre, La Trobe University.

Electronic copies of this report are available from the La Trobe University Research Repository
http://hdl.handle.net/1959.9/562870

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Executive summary

Background

Epidemiological research suggests that compared to the general population people with disabilities

experience significantly higher rates of abuse and that people with intellectual disabilities and those

who reside in residential services are at particularly high risk. The socio-ecological framework

conceptualised violence and abuse as an outcome of complex interrelationships between individual

characteristics, their social and physical environment and the cultural context. In recent years policy

makers, researchers and advocates have acknowledged the extent of violence against people with

disabilities with a wide array of prevention strategies described in the scholarly and grey literature.

Aim

This report aims to map this broad literature on the abuse of people with intellectual disabilities and

identify: 1) personal, environmental and relational aspects, as well as factors in service environments

and organisational cultures associated with the vulnerability of people with intellectual disabilities to

violence and abuse; 2) preventative abuse strategies for people with intellectual disabilities, and, 3)

review the evidence about the quality and effectiveness of these strategies.

Method

A literature review was conducted to identify epidemiological data on abuse and its impact, as well

as to identify risk and protective factors for abuse among people with intellectual disabilities in

residential care. A systematic scoping review was conducted to identify relevant studies published in

the last 10 years in the peer review and grey literature evaluating abuse prevention interventions.

Findings

Risk factors for violence and abuse. An emerging body of literature attempts to understand factors

associated with the higher prevalence of abuse against people with intellectual disabilities, in general

and in disability services in particular. Most of this literature has its foundations in the socio-

ecological framework and defines the person’s vulnerability to abuse as an outcome of an interactive

process between the social context in which the person lives and a set of underlying personal factors,

that when present place the person at risk of abuse.

Individuals with disabilities – personal risk factors. Some scholars have identified the severity of the

cognitive impairment and associated characteristics (such as challenging behaviour and

communication difficulties) as risk factors to abuse. Additionally, many of the risk factors identified

in the general population are particularly prevalent among people with intellectual disabilities. These

include poverty, low self-esteem, unemployment, poor-quality health care, exposure to history of

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violence and abuse, restricted access to essential services, dependency on others, smaller social

networks, inadequate housing, and social stereotypes of vulnerability. Other risk factors for people

with intellectual disability are associated with living in residential care services, social isolation,

contact with multiple potential perpetrators and socialisation to compliance. Several scholars have

also suggested higher vulnerability of women to abuse compared to men (Brown & Turk, 1994;

Smith, 2008; WWDA, 2017). However, other epidemiological surveys and reviews have failed to

document this difference (Hutchison & Stenfert Kroese, 2015; Peckham, 2007), hence the

association between gender and abuse remains underdeveloped. A critical examination of the

literature reveals several challenges that hamper the ability to draw a conclusions about the

association between gender and vulnerability: first, most of the research conducted in this area has

focused on sexual abuse of women with intellectual disability and is mostly limited to descriptive

information retrieved from case records or small qualitative studies of the experiences of woman

who has been sexually abused (without using control groups) (Teaster et al, 2007). Secondly, in

many cases the data does not distinguish between different types and severity of disability or

residential settings (Hutchison & Stenfert Kroese, 2015). Thirdly, it has been suggested that the

existing data may be biased as cases of abuse of men are often not recognised and underreported.

Finally, as mentioned above, it seems that statistical prevalence data is limited and does not allow a

rigorous comparison between men and women with intellectual disabilities.

Perpetrators of abuse – risk factors. The literature suggests that in most cases of abuse the

perpetrators are known to the victim, with multiple studies identifying personal characteristics of

perpetrators such as male gender and age as risk factors. In addition, having a history of abuse as a

victim or a perpetrator was also associated with further incidence of abuse. Another body of research

established higher prevalence of particular personality traits (external locus of control) and

personality disorders (psychopathy, narcissism and sociopathy) among perpetrators of abuse.

Organisational environments – risks or protective factors. Research on the quality of supported

accommodation services has identified a bewildering array of interacting variables associated with

resident outcomes (abuse or opposite quality of life and safety). These indicators may be captured

under the conceptual framework of organisational culture. Research has identified associated cultural

indicators, including the skills and attitudes of managers, skills and training of staff, organisational

procedures, values and care philosophies. These indicators found in the literature were evaluated

using rigorous observational methods in Australian group homes. This research has culminated in

five evidence-based dimensions of organisational culture: 1) Alignment of power holder values; 2)

Regard for residents; 3) Perceived purpose; 4) Working practice; 5) Orientation to change and ideas.

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Preventative abuse strategies for people with intellectual disabilities. The systematic search for

evaluations of the effectiveness of interventions to prevent abuse against persons with intellectual

disabilities identified six studies that met the inclusion criteria. These studies can be categorised into

three groups based on methods of training and target population: 1) Behavioural-skills training; 2)

Training using a cognitively oriented decision-making; and 3) Psycho-education training for care

staff or individuals with intellectual disabilities.

Discussion and conclusion

The review reveals that the notion of prevention strategies has been discussed in the peer-reviewed

and grey literature, and many intervention strategies have been designed and implemented over the

years. Despite this, only a very small fraction of them have been rigorously evaluated, and these all

relate to primary prevention strategies predominantly targeted at individuals with mild to moderate

intellectual disability.

Given this paucity of evidence, it seems that in order to establish “evidence-based” effective

prevention strategies and to reduce the prevalence of abuse and violence in the lives of people with

intellectual disabilities, research and interventions need to evolve from the response-to-risk approach

to a broader framework encompassing the individual’s safety as part of their quality of life. Relying

on the evidence-based indicators of organisational culture identified in the literature may prove

fruitful in promoting good quality of care that is associated with better safety and quality of life

outcomes for individuals with intellectual disabilities.

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Literature Review of Best Practice Supports in Disability Services for the Prevention of Abuse

of People with Disability

Introduction

Violence and abuse against individuals with disabilities is a serious public issue. The two groups of

people with disabilities most at risk, are people with intellectual disability and those who live in

residential settings (Didi et al., 2016; Dowse et al., 2013; Lan-ping et al., 2009; Levy & Packman,

2004; Ortoleva & Lewis, 2012; Ottmann et al., 2016; Women with Disability Australia [WWDA],

2012; 2011). Abuse is a complex phenomenon that can only be understood as an interactive process

between individual characteristics and sociocultural contexts (Fisher et al., 2016; White et al., 2003)

By ratifying the United Nations Convention on the Rights of Persons with Disabilities (2006), the

Australian government declared its obligation to ensure the human rights of people with disabilities

and to combat abuse. The Convention mandates state parties to “take all appropriate legislative,

administrative, social, educational and other measures to protect persons with disabilities, both

within and outside the home, from all forms of exploitation, violence and abuse, including their

gender-based aspects”. Similarly, at the State government level, the Victorian Disability Act 2006

sets out the rights of people with disabilities to respect and dignity, recognising their human rights to

“live free from abuse, neglect and exploitation”. Such rights are also reflected in the Victorian

Charter of Human Rights and Responsibilities Act 2006 (Vic). These pieces of legislation require

governments to take appropriate measures to “prevent all forms of exploitation, violence and abuse”

and ensure “assistance and support for persons with disabilities and their families and caregivers,

including through the provision of information and education on how to avoid, recognise and report

instances of exploitation, violence and abuse”. In a sector wide partnership National Disability

Services developed the Zero Tolerance initiative which took a holistic approach to abuse prevention

(Robinson, 2015). This initiative offers disability services an overarching framework for

understanding the causes of violence and abuse that informs interventions to improve practice aimed

at safeguarding the rights of the people they support (National Disability Services [NDS], 2016)

Increasingly, over the last decade, policy instruments and research acknowledge the extent of

violence against people with disabilities, and a wide array of prevention strategies are described in

the scholarly and grey literature. Despite, growing attention to this issue, there is however, little

evidence about effectiveness of interventions to inform the prioritisation of effort, and frameworks

are largely conceptual rather than evidence based. More rigorous evaluation is required to establish

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the effectiveness of abuse prevention strategies to advance evidence-based practice in this field

(Northway et al., 2007; Perry, 2004; Quarmby, 2011; Robinson & Chenoweth, 2011; 2012).

In this report, commissioned by the Disability Services Commissioner, we provide a brief review of

the broader literature on abuse of people with intellectual disabilities, and analyse the scholarly

research literature on the effectiveness of abuse prevention strategies. Our focus is particularly on

those in receipt of disability services who are also often those with higher support needs and more

severe levels of intellectual disability.

We note that much of the literature does not differentiate between people with disabilities in general

and people with intellectual disability, and refers to violence and abuse. We use the term abuse

throughout this report to refer to both violence and abuse unless a source has differentiated between

these terms.

Using a socio-ecological model of abuse as the conceptual framework we seek to identify: 1).

Personal, environmental and relational aspects as well as factors in service environments and

organisational cultures associated with the vulnerability of people with intellectual disabilities to

abuse, and; 2). Preventative abuse strategies for people with intellectual disabilities, and evidence

about the quality and effectiveness of these strategies. This critical analysis of the literature identifies

core elements and strategies used in prevention of abuse of people with intellectual disabilities,

highlighting the strengths and gaps in these strategies.

Definitions of abuse

Abuse is broadly defined as a violation of an individual’s human or civil rights, through the non-

accidental act or actions of another person or persons (Cooper et al., 2008). This definition includes

physical, sexual, verbal, psychological or emotional abuse, constraints and restrictive practices,

financial, legal, civil and systemic abuse, and may consist of a single act or repeated acts. The scope

of this review includes sexual, physical and emotional abuse defined by the National Disability

Abuse & Neglect Hotline as (Department of Social Services, 2016):

• Physical abuse – inflicting physical injury, pain or any unpleasant sensation.

• Sexual abuse – sexual contact with a child aged 16 or under. Sexual activity with an adult

who is unable to understand or who has been threatened, coerced or forced.

• Psychological or emotional abuse – verbal assaults, threats, harassment, humiliation or

intimidation. Failure to interact or acknowledge a person’s presence.

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In the context of abuse in community care environments it is important to note that abuse may be a

continuum of circumstances and its definition determined by the impact on the client. In disability

services, difficulties in establishing “exactly where to draw the line of inappropriate/non-optimal and

the unacceptable” (Cashmore et al., 1994) are compounded by the fact that many people with

intellectual disabilities are unable to recognise and report abuse. Therefore, defining whether abuse

has occurred must take into account, not only the nature or intent of the alleged perpetrator’s actions

(and whether these reach a criminal threshold), but also the experience of the individual with the

disability and the impact on their physical and psychological well-being (Cashmore et al., 1994;

Sobsey, 1994). The Victorian Law Reform Commission’s recommendation that abuse of people with

impaired decision making should be regarded as a new “public wrong” supports this view,

suggesting civil penalties and noting that whilst abusive behaviour may constitute a criminal offence

of assault, “It is important, however, that abuse of vulnerable people be characterised as a public

wrong in some circumstances, even when criminal proceedings are unavailable or unlikely to

succeed” (Parliament of Victoria, 2015).

A conceptual model of understanding abuse

No single factor can explain why abuse of people with intellectual disability occurs and persists. Its

causes are commonly conceptualised as the complex interrelationship between individual

characteristics, their social and physical environment and the cultural context (Fisher et al., 2016;

Terry et al., 2014; White et al., 2003). The socio-ecological framework is the conceptual model

proposed by the World Health Organisation for exploring abuse in the lives of vulnerable

populations, and the model most frequently used in the literature (Fitzsimons, 2017). As Figure 1

illustrates, in this model, abuse is conceptualised as an outcome of the complex interaction of factors

at four levels of analysis: individual, relational, community and broader societal context.

Figure 1: Socio-ecological model for understanding abuse, violence, risk and protective factors

Source: Krug, et al., 2015.

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The individual level includes personal health and socio-demographic characteristics of the victim and

perpetrator, and is associated with higher risk of exposure to abuse.

The relational level includes characteristics and types of interaction between the individual and their

immediate social network in personal and professional settings.

The community level is the social context in which social relationships occur, such as disability

services, neighbourhoods and workplaces.

The broader societal context comprises the factors that influence whether violence is encouraged or

inhibited in the society more widely, and the economic and social policies that maintain inequalities

between people, and social and cultural norms such as those around disability.

The socio-ecological framework regards the interaction between factors at different levels with equal

importance to the influence of factors within a single level (Fisher et al., 2016; White et al., 2003).

For example, Sobsey’s (1994) socio-ecological theory of abuse of people with disability focussed on

interpersonal relationships between carers and people being supported in the context of power

differences. He demonstrates how, in this context, reinforcements such as social isolation and

dehumanisation of individuals with intellectual disability exist in the community and societal levels

that allow abusive relationships to continue.

The socio-ecological framework is also useful for identifying and clustering intervention strategies

according to the level in which they act. For example, psycho-educational and skill development

interventions act at the individual level to strengthen the person’s ability to recognise abusive

situations and react in a manner which may reduce the abuse. Strategies targeting the community

level entail interventions aimed on monitoring and developing a “protective organisational culture”

in disability services.

The scholarly literature suggests that compared to the general population people with disability

experience significantly higher rates of abuse and it is asserted that people with intellectual

disabilities are at particularly high risk (Didi et al., 2016; Dowse et al., 2013; Lan-ping et al., 2009;

Levy & Packman, 2004; Victorian Ombudsman, 2015; WWDA, 2012; 2011). However, there is no

strong statistical evidence of these claims. The omission of people with disabilities from national

data collection strategies means there is no reliable national data on the prevalence, extent, nature,

and impact of abuse against individuals with intellectual disabilities in the range of settings in which

they receive support (WWDA, 2012). For example, the Australian Personal Safety Survey, the core

database that captures prevalence and type of violence at a population level, excludes individuals

with disabilities with communication difficulties and those who reside in settings other than private

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dwellings (WWDA, 2012; 2011). A search of the international literature reveals similar knowledge

and methodological gaps in other Western countries.

Epidemiological research has found wide variation in reported incidence of abuse, often accounted

for by the absence of consistent definitions of both abuse and disability. For example, one review of

the prevalence of abuse of people with disabilities, found rates ranging from 26% to 90% over the

lifetime of women with disabilities and 28.7% to 86.7% for men (Hughes et al., 2012). A different

approach to exploring the incidence of abuse among individuals with intellectual disability was taken

by Beadle-Brown et al., (2010) who analysed UK adult protection cases, which include a broad range

of vulnerable groups. Their analysis of cases between 1998-2005 found that 32% of the reported

abuse cases involved individuals with intellectual disability.

The most common types of abuse reported in the Beadle-Brown et al. (2010) study were physical

(29%) and sexual (17%). Furthermore, 33% of the reported cases identified multiple types of abuse,

mostly physical combined with psychological abuse, and 13% of the cases involved multiple

perpetrators. Similarly, an analysis of 494 confirmed cases of neglect and abuse in public residential

facilities for people with intellectual disabilities across six US states found that 80% involved

physical abuse (McCartney & Campbell, 1998)

The literature suggests that most cases of abuse occur in institutional or service settings, and that in

most cases perpetrators are known to the victim. For example, a UK study found that most (63%)

adult protection cases involving people with intellectual disabilities occurred in residential care

service and the most frequently reported perpetrators were direct care staff (Beadle-Brown et al.,

2010). Similarly, a UK 15-year longitudinal study of 118 confirmed cases of sexual abuse found that

in 99% of cases involving sexual abuse of people with intellectual disability the perpetrator was

known to the victim (McCormack et al., 2005). In this study 54% of the perpetrators were peers with

intellectual disabilities and 43% were people involved in the care of the person. Earlier studies by

Brown et al. (1995) also identified that perpetrators were predominantly either family, paid staff or

peers with intellectual disabilities. Similarly, in their analysis of 161 cases of sexual abuse, Sobsey

and Doe (1991) found that while abusers can be strangers (8%), casual acquaintances (15%), or other

individuals with disabilities (7%), most commonly they are a family member or a paid service

provider involved in the care of the person with a disability.

Estimates of abuse vary widely, depending on the definitions of abuse and disability used, and data

collection methods. This limits comparison of data between vulnerable groups and the general

population. Indeed, Murphy (2007) and Brown (1995) point out that the available data on the

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incidence and prevalence of abuse perpetrated towards people with intellectual disability is likely to

be only the ‘tip of the iceberg’ given the poor recognition and under-reporting of abuse. The fact that

victims of abuse are more likely to know, live and rely on their perpetrators for care adds an

additional layer of complexity to the understanding of the phenomena (Murphy, 2007).

Impact

Research shows that abuse has far-reaching and life-long consequences for victim`s physical health,

well-being and socio-psychological functioning (Anda et al., 2006; Brown et al., 2009; Knudsen et

al., 2006; Mercy & Saul, 2009; Shonkoff et al., 2009; Shonkoff & Garner, 2012). However, while

consequences have been studied in the general population, little systematic research has explored the

impact of abuse for people with intellectual disabilities in care service systems (Murphy et al., 2007;

Rowsell et al., 2013; Wigham et al., 2011).

The little research there is indicates that people with intellectual disabilities experience similar

detrimental effects of abuse to those found in the general population. A study exploring the

psychological impact of abuse for a small group of individuals with severe intellectual disabilities

and very limited communication skills found that family members and care staff perceived victims as

displaying increased frequency and severity of emotional, physiological and behavioural symptoms

of psychological distress (Rowsell et al., 2013). In a comparison of people with intellectual disability

who had experienced abuse with those with no history of abuse, Sequeira et al. (2003) found that

people who had been abused displayed higher levels of trauma, anger, depression, self-harm

behaviours, withdrawal, anxiety and other stereotypical behaviours. Other studies exploring the

impact of sexual abuse on individuals with intellectual disability have found a strong association

between a history of sexual assault and challenging behaviours, self-harm and sexualized behaviour

(Hulbert-Williams & Hastings, 2008; Rowsell et al., 2013).

Risk factors for violence and abuse

An emerging body of literature attempts to understand factors associated with the higher prevalence

of abuse against people with intellectual disabilities, in general and in disability services in

particular. Most of this literature has its foundations in the socio-ecological framework and defines

the person’s vulnerability to abuse as an outcome of an interactive process between the social context

in which the person lives and a set of underlying personal factors, that when present place the person

at risk of abuse (Blum et al., 2001).

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Individuals with disabilities – personal risk factors

Some scholars propose that the very characteristics associated with intellectual disability are a key

risk factor for abuse on the basis that cognitive impairment hampers the individual’s ability to

recognise and respond appropriately to situations where danger exists (Casteel et al., 2008;

McCartney & Campbell, 1998; Rusch et al., 1986). Severity of cognitive impairment magnifies risk

as a number of studies have found that the vast majority of people with intellectual disabilities

exposed to abuse have severe or profound intellectual disability (Casteel et al., 2008; McCartney &

Campbell, 1998; Rusch et al., 1986). Similarly, statistical analysis of abuse cases in US public

residential facilities for people with intellectual disabilities, found that having challenging behaviour

and communication difficulties increased the probability of being abused (McCartney & Campbell,

1998).

Many of the risk factors of abuse identified in the general population are particularly prevalent

among people with intellectual disability. These include poverty, low self-esteem, unemployment,

poor-quality health care, exposure to history of violence and abuse, restricted access to essential

services, dependency on others, smaller social networks, inadequate housing, and social stereotypes

of vulnerability (Fawcett, 2009; Ortoleva & Lewis, 2012; Robinson, 2013). This suggests that the

vulnerability of people with intellectual disability to abuse is strongly associated with their socio-

demographic characteristics, and societies’ structural, social and political responses to their needs

(Robinson, 2013).

The dependence of people with intellectual disabilities on others for support as a consequence of

cognitive impairment also heightens risk. For example, a number of researchers suggest that, in

general, any limitation on one’s ability to undertake activities of daily living heightens the risk of

abuse (Gilson et al., 2001; Swedlund & Nosek, 2000; Thomas et al., 2008). Further risk factors are

associated with living in residential care services (Nosek et al., 2006; Powers et al., 2009), social

isolation (Beadle-Brown et al., 2010) and contact with multiple potential perpetrators (Nosek et al.,

2001).

Sobsey (1996) argued that the key to understanding the victimisation of people with intellectual

disability is their relative lack of power over their own lives. Sobsey contended that people with

intellectual disability seldom have opportunities or support to make decisions about the way they live

their lives, and have to rely on others, over whom they have little or no control, to meet physical,

psychological or economic needs. Other scholars note that people with intellectual disability often

lack credibility or “voice” if they do have the opportunity to complain or to express preferences

Page 13

about the support they receive (Ticoll, 1994; Thomas et al., 2008). Furthermore, their experience of

dependence on services may lead to “over compliance” (Mazzucchelli, 2001) or “learned

helplessness” (Saxon et al., 2001). These researchers suggest that people with intellectual disabilities

in the care system often have a learning history, that reinforces compliance, which may be a further

risk factor that means they comply with requests that result in abuse.

Perpetrators of abuse – risk factors

Scholars have explored the characteristics of perpetrators, and suggest that at least some offenders fit

specific profiles (Sobsey, 1994). Multiple studies (McCarthy, 1998; Turk & Brown, 1993) identify

gender as a risk factor. For example, in their research on referrals to adult protection services in the

UK, Cambridge et al. (2011) examined the characteristics of confirmed and alleged perpetrators.

They noted …

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