February 2011
Prepared by: Clare McFeely, National GBV & Health Team
Chloe Trew, Scottish Consortium for Learning Disability

Learning Disabilities and Gender-Based Violence – Literature Review Summary
Key Findings
People with learning disabilities are at increased risk of experiencing gender based violence (GBV).

Disabled people are more likely to experience GBV than non-disabled people..

People with learning disabilities are more likely than other disabled people to experience GBV.

Disabled women are more likely to experience GBV than disabled men or non- disabled women.

The perpetrators of abuse are most often known to the victim.

People with learning disabilities are less likely to report abuse and less likely to receive a good service from agencies when they do.

The consequences of abuse for people with learning disabilities are similar to those without learning disabilities but may be more severe.

Health care workers have a responsibility to protect people from abuse, identify abuse and to respond to the needs of people who have been abused.

There is little evidence of effective interventions to address this issue.
Gender-Based Violence
The term gender-based violence encompasses the spectrum of abuse experienced disproportionately by women and perpetrated predominantly by men i.e. domestic abuse, rape and sexual assault, child sexual abuse, sexual harassment, stalking, commercial sexual exploitation and harmful traditional practices such as forced marriage and female genital mutilation (United Nations 1992).
Some women will experience more than one form of gender-based violence in their lifetimes. Other inequalities such as ethnicity, poverty and disability increase vulnerability to abuse and compound the consequences of abuse
(Humphreys 2007, Walton-Moss et al 2005).
The consequences of GBV are wide ranging. It is estimated that the cost of domestic abuse alone in England and Wales is £17.7 Billion per year, including health and legal services, lost economic output and human and emotional costs for individuals
(Walby 2009).
Learning Disability and Autism Spectrum Disorder
In
‘The Same As You?’, people with learning disabilities and autism spectrum disorder (ASD) are defined as having ‘a significant, lifelong condition that started before adulthood, that affected their development and which means they need help to understand information, learn skills and cope independently’
(Scottish Executive, 2000).
People with learning disabilities may require supports and services to meet ‘everyday needs, extra needs due to their learning disability and complex needs, [such as] needs arising from both learning disability and from other difficulties such as physical and sensory impairment, mental health problems or behavioural difficulties’
(Scottish Executive, 2000).
Gender-Based Violence and Learning Disability
People with learning disabilities and/or ASD are more likely to experience gender based violence than the general population (for example Martin et al 2006, Sullivan & Knutson 2000, Beail &
Warden 1995).
A number of factors increase their risk of abuse. These include:
 The ‘medical model’ and perceptions of learning disabilities
Although essentially disease focussed, the medical model has been applied to both learning disabilities and GBV. In this approach, the abuser and experience of abuse are removed from the situation and the focus is placed on the person who has experienced abuse.
This in turn can lead to the victim or the learning disability being perceived as the problem (Holowmotz
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2009, Stark & Flitcraft 1996, Warshaw 1996).
Hollomotz (2009) cautions against labelling people with learning disabilities as inherently vulnerable to gender based violence, warning that this risks seeing a person’s impairment as inherently limiting. This approach may discourage activity to support and potentially empower individuals to make self-protecting choices.
 Lack of awareness of sexual relations and of the law
Historically, people with learning disabilities have been regarded as sexual “deviants”,
“threats to genetic purity” or as “asexual” and “childlike” (O’Callaghan & Murphy 2007).
Consequently, formal programmes of education about sexual relationships, consent and the law 1 relating to this are not usually delivered by services for or families of people with learning disabilities (O’Callaghan & Murphy 2002) . In addition, many educational materials are inappropriate for use with people who have moderate to severe learning disabilities (Grieve et al 2006).
As a result, many disabled adults have a limited understanding of these issues
(Callaghan & Murphy 2007) .
 Living arrangements (living with carers or in congregate care settings)
Perpetrators of abuse are usually known to the victim, most commonly they are ‘care’ providers, family members or other service users (Mansell 2009, Peckham 2007, Sequeira 2003a,
Joyce 2003, Ahlgrim-Delzell & Dudley 2001, Stromness 1993).
This creates opportunities for opportunist or repeated abuse as victims may be unable to avoid the abuser (Stromness 1993).
Congregate care settings may increase risk of abuse through exposure to both staff and other service users. Anecdotal evidence and criminal trials subsequent to long stay hospital closures suggest that sexual abuse of people with learning disabilities by staff or other residents was common (Commission for Social Care and Inspection and The Healthcare Commission 2006,
The Healthcare Commission 2007).
In addition, people with learning disabilities living in the community are also at risk of abuse from workers and from others in the community (for example Mental Welfare Commission for Scotland
2008). Dependence on assistance, particularly with personal care, creates a power imbalance which can unduly influence ability to consent or to report abuse (O’Callaghan &
Murphy 2004).
 Reduced likelihood of disclosure of abuse.
People with learning disabilities are less likely than the general population to report abuse and are less likely to be believed when they do (Voice, Respond & Mencap 2001). They are even less likely to be believed when allegations are made against staff (Ahlgrim-Delzell & Dudley 2001).
People with learning disabilities can face additional barriers to disclosure such as communication difficulties or lack of awareness that abuse has taken place. Disclosures are often not believed or not acted on, as was found in the Independent Longcare Enquiry
(1998) 2 . When disclosure is made and believed this can also have negative consequences for the victim. People with learning disabilities are frequently often considered to be
1
The Sexual Offences (Scotland) Act 2009 came into force on 1 st December 2010. People with learning disabilities are covered under the Act as ‘Mentally Disordered Persons’ and the Act defines when a person with a learning disability and/or ASD is considered not to have consented to sex or other conduct. Where a person is unable to do one or more of the following, they will not have consented to sex:
(a) understand what the conduct is,
(b) form a decision as to whether to engage in the conduct (or as to whether the conduct should take place),
(c) communicate any such decision
2 http://www.adultprotection.freeola.org/Independent%20Longcare%20Inquiry.htm
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unreliable witnesses and therefore cannot seek redress through legal processes. In such situations, the victim’s freedom of movement may be restricted to avoid the known abuser
(The Mental Welfare Commission 2008).
Literature Review
This review searched electronic data bases using a range of keywords for both Learning
Disabilities and Gender-based Violence from 1990 to October 2010. The search strategy is detailed in the appendix. Overall this search identified little primary research into GBV and learning disability. However, the available literature does demonstrate a higher risk of experiencing all forms of GBV for disabled people, particularly women with a learning disability.
Prevalence
Experiences of abuse often go unreported due to the private and controlling nature of abuse and the stigma associated with some forms of abuse, therefore prevalence rates are likely to be underestimated. In addition to under-reporting, methods of data collection and types of data gathered can vary between sources (Greenan 2004, Walby & Allen 2004, Krug et al 2002, Agar &
Read 2002 ).
That said, international research studies have found a mean lifetime prevalence of childhood sexual victimisation of 20% among women and between 5-10% of men in the general population (Krug et al 2002).
It is estimated that between one third and a quarter of women in Scotland will experience domestic abuse at some point in their lifetime (Scottish
Executive 2000).
Despite the additional challenges in reporting, there is evidence of an even higher prevalence of abuse in disabled people:

Disabled children are 3 times more likely to experience sexual abuse than non-
 disabled children (Sullivan & Knutson 2000).
Disabled women are 4 times more likely than non-disabled women to experience sexual assault (Martin et al 2006).

Young women with cognitive impairment were 5 times more likely to experience sexual assault than women without disabilities (Martin et al 2006).

Lin et al (2009) found that people with learning disabilities are more likely to experience sexual abuse than people with other impairments .
As with other forms of GBV, forced marriage is believed to be unrecognised and underreported. It is suspected that issue is even more hidden amongst people who have a learning disability (HM Government 2010).
Disabled women are at greater risk of abuse than disabled men (Mays 2006, Stromness 1993 ).
For disabled women vulnerability associated with disability is compounded by vulnerability as women (Mays 2006).
More disabled women and girls experience sexual abuse than disabled men and boys (Mandell et al 2005, Stromness 1993). Women experience more direct physical contact abuse than men (Stromness 1993).
Prevalence of forced marriage is believed to be similar for men and women with learning disabilities; however, it is anticipated that women are more likely to suffer rape and domestic abuse as a consequence of this (HM
Government 2010).
Health Impact of abuse
The health consequences of sexual abuse in childhood (CSA) and domestic abuse are wide ranging and can result in reduced physical functioning, poor mental health and associated behavioural problems such as alcohol and substance misuse. The negative health impact can persist long after the abuse has stopped (Nelson & Hampson 2005, Krug et al 2002).
For people with learning disabilities the consequences of abuse can be similar in nature to that of non-disabled people but may be more severe for example, greater negative emotional
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effect
(Reiter et al 2007).
Consequences of abuse identified in people with learning disabilities include:
 High incidence of psychiatric and behavioural disorder
(Sequeira et al 2003b)
 Displaying “stereotypical behaviour” such as rocking and “bizarre” behaviours
(Taggart
 et al 2010).
Sleep disturbance, difficult behaviour and self harm (O’Callaghan et al 2003).
Men and women with learning disabilities can respond differently to abuse. Women demonstrated high levels of passivity and of using strategies to avoid making decisions.
They reported higher stress levels, more often had dual diagnosis and were more likely to be receiving counselling. They were more likely to rely on others for help in going out in the community than those who had not been abused (Hickson et al 2008).
A small study (Beail &
Warden 1995) found that men who had experienced abuse presented challenging behaviour and acted out sexualised behaviour whereas women who had experienced abuse did not.
Women are more likely to disclose their experiences of sexual abuse than men (Stromness
1993).
Service Responses to Disclosure of Abuse
Services have a responsibility to support people with learning disabilities in relationships and to protect them from abuse (Scottish Government 2005, NMC 2002, Department of Health 2000). The
Adult Support and Protection (Scotland) Act 2007 places a statutory requirement for services to protect adults at increased vulnerability to harm and outlines the procedures required in each authority.
3
Despite this, many service responses to the experience of abuse of people with learning difficulties are inadequate. High profile investigations, such as the Independent Longcare
Report (1998) highlight the extent of experience of abuse perpetrated by those employed to provide care. This report also highlighted that even when disclosures were thought to be
“probable” no action was taken to protect victims or prosecute perpetrators
(also Joyce 2003).
This was echoed more recently in the case of Miss A (Mental Welfare Commission for Scotland
2008).
There is little recent research on the awareness of workers who support people with learning disabilities on this issue. One study with health and social care workers identified experience of domestic abuse and / or incest as a risk factor for poor mental health in women with learning disability (Taggart et al 2010).
However, awareness and competence in identifying, reporting and recording of abuse will be varied (Beail & Warden 1995).
Monahan & Lurie (2003) list a number of issues which can limit workers’ responses to disabled adults ’ reports of abuse. These include the workers’ own experience of abuse, their understanding of sexual abuse as a means of enforcing control, their ability to cope with the
“intense sadness” of knowing about the abuse of a disabled individual, and their belief in the service users ’ reason for disclosure (for example, fantasy or attention-seeking behaviour).
Interventions
There is little evidence of effective interventions in preventing or responding to abuse of people with learning disabilities
(Monahan & Lurie 2003).
Sexual abuse prevention work with adults with learning disabilities has been shown to increase their knowledge and understanding about sexual abuse but does not change behaviours (Doughty & Kane 2010,
O’Callaghan and Murphy 2007, Khemka et al 2005, Bruder & Stenfert Kroese 2005, Lumley et al 1998).
3 For more information see http://www.legislation.gov.uk/asp/2007/10/pdfs/asp_20070010_en.pdf
or http://www.scotland.gov.uk/Publications/2009/01/30112831/18
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Many reports on interventions are based on case studies
(Monahan & Lurie 2003, Sinason 2002)
or samples of small size
(for example Peckham 2007)
and call for further large-scale case control studies to establish a reliable evidence base. That said, these smaller studies report positive outcomes for service users and may suggest areas for further work.
 A 20-week group work intervention conducted with one group of female survivors of sexual abuse with learning disabilities reported reduction in depression, self harm and trauma as well as increased awareness of sexual abuse (Peckham et al 2006 &
2007).
 A case study of an intervention to address post traumatic stress disorder symptoms in one woman, utilised education, relaxation training, problem solving, cognitive restructuring and exposure techniques. In this one case flashbacks were eliminated and mood stabilised and improved (Fernando & Medlicott 2009).
 Sinason (2002), a psychotherapist, advocates psychotherapy to address consequences of sexual and physical abuse for people with learning disability based on case studies from her own practice.
A number of key elements are recommended for any intervention for adults with learning disabilities:
 Specific issues in relation to self-image, self-esteem, dependency, fear of abandonment and vulnerability to caregivers ’ wishes must be identified and addressed by practitioners who identify abuse (Monahan & Lurie 2003).
]
 A multi-agency response is required, particularly when vulnerable adults are accessing support from a number of agencies (Department of Health 2000).
 Recognition that an individual’s capacity to consent cannot be assumed and can change (HM Government 2010).
 Whenever possible interventions should be planned and progressed in conjunction with the individual who has experienced abuse (HM Government 2010).
 Interventions should adopt an “ecological approach” and aim to address needs at different levels from the individual (for example safety planning), to the immediate environment (home, carers) to the influence of culture and society (Hollomotz 2007,
Carlson 1997).
 Consideration of the role of carers in intervention delivery (HM Government 2010, Peckham
2007)
C arers report that it can be difficult not knowing what happens during interventions for people with learning disability which are delivered in private (Peckham et al 2007).
To address this
Peckham et al (2007) recommend involving carers in the practicalities of the intervention (for example, arranging transport). Knowledge of the abuse can have a significant impact on the well-being of carers which may require a separate carer intervention
(Peckham 2007,
O’Callaghan et al 2003)
. Given the potential for abuse to be perpetrated by a carer, professionals must carefully assess the safety of the abused person when considering information sharing or involvement of carers (HM Government 2010).
Conclusion
It is clear that much remains to be done in terms of identifying and providing appropriate interventions for people with learning disabilities who have experienced gender based violence. There is a growing awareness that GBV is a significant issue for people with learning disabilities, to which current services are not adequately prepared to respond.
Although not included in this review, much of the available literature focuses on men with learning disabilities as perpetrators of sexual abuse, but there does not appear to be an equivalent focus on prevention and self-protection for the (predominantly female) victims. A systematic approach to researching and implementing this work is required (Northway et al
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2005)
, ideally with full participation of people with learning disabilities in this process
(Walmsley
& Johnson 2003).
Given the requirement to respond, preparation of both specialist and universal services staff is required to equip them to identify abuse and to provide an appropriate response
(Mulholland
2003).
Additional supports may be required for specialist nurses working in an environment where a culture of abuse is embedded (Davies & Jenkins 2004).
Although limited, the evidence outlined in this review provides a basis for developing supports for people with learning disabilities affected by GBV and service providers.
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” International Journal of Mental health Nursing. 11 p70-79
Ahlgrim-
Delzell L & Dudley JR (2001) “Confirmed, unconfirmed and false allegations of abuse made by adults with mental retardation who are members of a class acti on law suit.“ Child Abuse & Neglect. 25 p1121-1132
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HM Government (2010) Forced Marriage and Learning Disability: Multi Agency Practice Guidelines. London
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Hollomotz, A, (2007), “Beyond ‘vulnerability’: An ecological model approach to conceptualizing risk of sexual violence against people with learning disabilities” British Journal of Social Work, 39 p.99-112
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Krug EG, Dahlberg LL, Mercy JA et al (2002) World report on violence and health. WHO, Geneva
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Appendix - Search Strategy
Electronic databases were searched using key words for learning disability and gender-based violence. The following databases were searched: Ovid Medline, Embase, Social Work Abstracts;
CINAHL & ASSIA. A full list of search terms is provided in appendix 1.
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In addition, a hand search of British specialist learning disability journals and references cited in key articles was undertaken. Key policy documents and websites of specialist learning disability agencies
(for example Anne Craft Trust) were also searched.
It was anticipated that little research would be available on this topic and therefore no date parameters were set when searching initially. On reading it was noted that none of the articles produced before 1990 contained information that had not been covered in later work and so were excluded from the review.
GBV Search Terms
Child abuse, sexual
Sexual abuse
Adult survivors of child abuse
Incest
Domestic abuse
Domestic violence
Spouse abuse
Battered women
Partner violence
Family Violence
Abused women / woman
Abused mother
Rape
Sexual Assault
Sexual Harassment
Prostitution
Commercial Sexual Exploitation
Sex Offenses
Stalking
Forced Marriage
Female Circumcision
Honour / honor crime
Learning Disability Search Terms
Learning disability
Learning disorder
Learning difficulty
Intellectual disability
Challenging behaviour
Mental retardation
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