Prevalence
This can be difficult to determine; it is believed sexual abuse of people with LD is under-reported due (a) lack of awareness that abuse has taken place; (b) a lack of understanding by victims that they have been victimised; (c) the fear of retaliation, fear of loss of services, fear of further abuse by victims if they do report are just three. McCarthy & Thompson wrote the prevalence of abuse in adults with LD was 61% for women and 25% for men; almost all perpetrators were male with the majority being men with LD themselves. Furthermore, whilst the abuse was revealed by victims, they were often unaware of its social meaning. In a study by Thompson (1997) related to the sexual abuse by men with LD found that their victims also had LD – 54% the majority of whom were female. Those who are perpetrators with LD are more likely to be caught and reported “as they are less skilled than other perpetrators at covering their tracks”.
Research also found that “women and men are at risk… perpetrators are predominantly men and usually known rather than strangers” plus “a significant increase in the proportion of cases of abuse of men with learning disabilities reported” was noted. However, despite increased awareness/information on adult abuse, service agencies have not developed coordinated systems for reporting or recording sexual abuse.
As a result of poor recording, it is difficult to determine prevalence with any certainty. 2007 Research indicated those with intellectual disabilities will be “particularly vulnerable to abuse… [and] people with severe or profound ID are not able to describe what has happened to them” thus placing them at ongoing risk of abuse and also highlights abuse is “rarely prosecuted in the courts… reasons… frequent failures of police, carers, health and social services… in taking victims seriously… [and] difficulties of obtaining evidence, especially from the severely disabled victims”. McCarthy notes difficulties may exist in determining whether sexual intercourse when parties are known to each other is consensual or not particularly if both parties have LD. The BBC’s Victoria Derbyshire Programme attempted to identify the number of reports of sexual abuse among disabled people; request were sent to 152 councils asking for information covering 2013/14 and 2014/2015; 106 responded with a total of 4,748 reports of sexual abuse against adults with disabilities for the two year period. Of these, 63% were against those with learning disabilities.
Prevalence has limited statistical evidence in the UK; Barnardos note in their 2015 report on identified sexual exploitation of young people that 14% of the children in their study had diagnosed learning difficulties. Cambridge et al state actual data is “relatively incomplete and fragmented” and thus any data is likely to be an under-estimate (estimates vary between 10% and 80%. The Health & Social Care Information Centre publishes annual statistics on vulnerable adults; in their 2011 report, the statistics on sexual abuse of vulnerable adults was 11%; in 2012, the figure was 9% and similar in 2013 (at 9.2%). However, changes to the method and terminology (safeguarding adults), sexual abuse is now combined with discrimination and institutional abuse; nonetheless, the [albeit combined] figure is 9% for 2014/15. Additionally, the geographic region with the highest percentage of [combined] abuse is the southwest (12%).
(1) Risk/threat of harm and by whom
The risk of abuse, harassment or neglect of those with learning (and other) disabilities is higher than within the general population; according to Mencap in Behind Closed Doors, the reasons as to why disabled groups are at greater risk include:
• higher levels of low self-esteem and greater dependency on others, i.e. care staff and services over long periods;
• lack of social awareness or education to detect or anticipate abusive situations;
• higher levels of fear to which leads to being unable to challenge abuse and/or those who are acting inappropriately;
• lacking capacity to consent to sexual relations or being unable to recognise they have been victims of abuse or fear to report abuse despite recognition they have been the victims of abuse.
A number of victims will have communication difficulties whilst others fear disbelief; further, feelings of guilt and shame or a lack of approachable and trustworthy people to whom they can discuss abuse especially where abusers are within positions of trust/authority will be likely to impact upon disclosure. Mencap write that abusers tend to be male and work hard to gain positions of trust, seeking employment in areas where vulnerable people are likely to rely solely or mainly on carers; this provides ample and often unimpeded access to their victims. According to a report by the NSPCC, children with disabilities will be likely to be abused by a family member (when compared with non-disabled children); in addition, the report highlights other research which indicates that a significant number of children with harmful sexual behaviour have learning disabilities although cautions over interpretation of findings is advised.
Barnardos’ 2015 report highlighted several factors in relation to why children [and possibly adults] with LD are more likely to be at risk from sexual exploitation/abuse:
• impairment-related factors, including capacity to consent, difficulties associated with recognising exploitation or risk, impulsive behaviours and needs associated with a different understanding of social cues, interaction and communication;
• society’s treatment of people with LD, including overprotection, disempowerment, isolation and not considering individuals as sexual beings which in turn leads to little attention given provide information on healthy sexual relationships;
• a lack of knowledge, understanding and awareness of sexual exploitation of those with LD among professionals, parents and carers, and the wider community;
• a lack of identification of LD and focus on behavioural issues over the identification of exploitation or learning needs;
• a lack of understanding relating to consent and the capacity to provide this as well as a lack of understanding around professionals’ abilities to assess consent;
• the lack of professionals’ training on exploitation and LD; and
• low priority generally given to those with LD by service providers and policymakers.
The report provides a variety of examples where the above issues can cause exploitation and/or abuse (rather than protect from it):
“Ellie is now 23. She has a learning disability and describes herself as naïve and impulsive. Ellie is in a loving, happy relationship, but experienced sexual exploitation shortly after moving into supported living accommodation… her special school insisted that her mum had to pick her up and drop her off every day and that she must not step outside the gate even if she could see her mum coming down the street. Ellie had little opportunity for socialising and was not prepared for adult life… She thought the man she met at her new home was her boyfriend, but he was controlling and isolated her from her family.” (p.44)
In essence, the risk of harm can be great causing cause sexual, emotional and physical trauma (either in isolation or together) originating from those supposed to protect, care and help individuals develop but who are in fact causing harm. Abuse is likely to take place within victims’ home which should be a place of safety and if perpetrated by those in whom they have placed their care/trust, the risk of not being able to disclose may be greater.
(2) Impact on individual and signs to look for
The impact of sexual abuse can be difficult to assess and understand particularly for those who have difficulty in communicating. Sequeira & Hollins write that clinical effects include psychological disturbances, i.e. anger, crying, sexualised behaviour, verbal abuse, anxiety, fearfulness, self-harm, sleep disturbance and panic attacks; clinical symptoms are similar to those suffered by non-LD victims, i.e. poor self-esteem, aggressive/dominant behaviour, inappropriate anger, nightmares, etc. The study referred to by Sequeira & Hollins noted two groups – one with and one without LD and indicated “statistically significant differences between the groups… ” including poor sense of personal safety and little sexual knowledge although the researchers acknowledged such factors may be accurately described as risk factors and not necessarily effects of abuse. Additionally in the study of 119 victims (with information obtained from family members, service providers and in some cases victims) as to whether the victim experienced any social, emotional or behavioural injury plus what if any extent and the nature of trauma suffered. 9.8% with mild/moderate disabilities and 17.7% with severe and profound disabilities experienced withdrawal; 19.6% with mild and moderate disabilities and 31.1% with profound disabilities showed aggressive and/or other behavioural problems, i.e. inappropriate sexual behaviour and 3.9% with mild/moderate disabilities reporting no problems; all those with more severe learning disabilities showed difficulties. However, as there was no control group, researchers acknowledge that they could not be confident as to whether any of these identified difficulties would be present regardless of abuse.
Enable Scotland produced a guide on sexual abuse and learning disability which provides information as to what signs may be an indicator of abuse:
• physical injuries (i.e. cuts, bruises, bleeding in genital areas or inner thighs);
• physical changes (i.e. difference in walking, sitting, discomfort in certain positions);
• environment (i.e. torn, missing or damaged clothing, bedsheets or replacement sheets without explanation);
• behavioural changes (i.e. sleep disturbance, including sleepwalking, nightmares, insomnia, loss of modesty, fear of going out, using sexual terms not previously known/used, self-harm);
• emotional changes (i.e. depression, panic attacks, eating disorders, confidence being lost/lowered, obsessive behaviour).
These may be indicators of abuse but could also be linked to the person’s LD or issues unrelated to abuse; the important point is to look, listen and support. Furthermore, it is important to note that some signs may not be easily identifiable and/or immediately post-abuse. Research in 2006 by Callaghan, Murphy and Clare highlighted a lack of research on adults with severe LD stating focus tended to be on people with mild/moderate issues; the introduction notes: “Such individuals often have extremely limited communication skills so they may be unable to either understand or express what has happened to them”. In some cases, the consequences were pregnancy/abortion and STIs; there may, in addition to physical and emotional impact, be anxiety and trauma associated with giving evidence (or not) in any subsequent investigation and court proceedings. The study, however, did appear to emphasise the emotional trauma by parents/family of abuse victims and relied upon them (and their legal representatives) for disclosure of victims’ response and reaction to the abuse.
Noted in a paper on domestic abuse (which includes sexual abuse), the Tizard Centre in Kent produced a brief summary of research identifying (from surveys of practitioners and police) that individuals with LD may be in violent relationships as they may be considered as easy targets, social isolation and difficult family backgrounds. The research indicated carers and/or family members noted marked increases in the “frequency and severity of emotional, psychological and behavioural symptoms of psychological distress” and whilst some of these alleviated over time, overall psychological functioning all “remained severely compromised”. Callaghan et al also highlight the devastating impact of abuse particularly on those with higher (moderate/severe) levels of LD:
“… She had been able to use a few single words and some signs but all attempts at communication ceased. She appeared depressed and would spend long periods shaking, in a trance-like state, from which she was difficult to rouse. She tried to avoid all activities and places which, it was later learned, had been associated with her experiences, and if she was unable to do so, displayed extreme challenging behaviour, including soiling and aggression. For months, she appeared to re-enact what had happening, demonstrating explicit and specific sexual activity with dolls and attempting to masturbate in front of others.” (p.33, DoH, by Callaghan, Murphy and Clare)
To summarise, the impact of abuse is vast; for those with LD, it may be more difficult to provide support, understanding and therapy due to a lack of understanding as to what precisely occurred. The signs of abuse are not dissimilar to those found in non-LD victims but may be more pronounced or longer-term if disclosure cannot be made due to poor communication skills.
(3) Good practice on encouraging individuals to report sexual assaults
In 2004, the Home Office produced research on developing good practice and maximising potentials for sexual assault referral centres (SARCs); in relation to who reported sexual abuse/assaults to police, it noted “A significant minority (5%, n=193) of the case-tracking sample had a disability, most commonly with mental health or learning disabilities. This may indicate vulnerability to sexual assault among these groups” but provides no further information as to how to encourage reporting. Indeed, the case of Winterbourne View highlights that even where procedures are followed, where relatives and staff make reports of suspected abuse, there may be little if any action taken to address concerns and investigate allegations. Interestingly, whilst guides and toolkits exist for encouraging the reporting of assault and violence against some vulnerable groups (e.g. women, minority ethnic groups, mental health sufferers, male victims of sexual/domestic abuse) there is little guidance for organisations which have a direct or indirect role in dealing with, or on behalf of, those with LD.
The leaflet by Enable Scotland highlights listening and treating disclosure seriously as an important part of encouraging individuals to provide details of their victimisation. It goes on to say using the method of communication victims find most useful and helpful is essential and pressure should not be applied with open questions asked rather than closed; further, it is important to remain calm and not indicate distress as to the acts disclosed. There is no definitive good practice guide on encouraging sexual assault reports – even for victims with no LD issues, reporting can be difficult although highly publicised reports showing victims suffer no adverse impact may help. However, one important practice would be to ensure all and any reports are dealt with seriously; this is particularly so in environments which care for individuals with LD. Whilst guidelines and policies provide a method or actions which care workers and practitioners are to follow, if disclosures are not handled correctly, with no or poor follow-up, a lack of support to both the person disclosing and the person to whom disclosure was made plus inadequate management of allegations, any subsequent disclosures may be ignored.
Senior management/leaders should emphasise and reinforce the requirement to refer matters to relevant authorities to ensure anyone who has abuse disclosed to them knows the matter will be taken seriously and handled appropriately.
The Social Care Institute for Excellence (SCIE) provides some information on vulnerable victims of sexual assault (adults at risk); the “good practice resource” talks about issues to be considered when disclosure is made. Whilst it makes it clear that reporting the incident to police would be preferable it does highlight victims’ wishes should be a priority and that evidence can be obtained from victims without full reporting to police and advises on how to do so. However, the only reference to LD is the last sentence referring to the availability of Independent Sexual Violence Advisors “to assist people with learning disabilities and mental health needs”. Even the charity “Rights for Women” in their From Report to Court document only vaguely mention LD; for victims who “have a disability that affects… ability to communicate… ask for someone else to attend… to ensure that [they] understand what is being said and assist to communicate” (p.40).
Abuse in Care? is a research paper by Hull University developed as a means to help try and prevent abuse of those with learning difficulties who reside in care homes; this ‘guide’ is to assist those who may have concerns that something (not necessarily abuse) is not quite right and how to address those concerns. A project in Wales had the following aims: to develop ways for people with LD so they could find support following abuse and help to prevent abuse; researchers questioned individuals with LD and their findings “Looking Into Abuse” indicate when asked how to keep themselves safe, almost all participants stated they needed to learn to speak up about abuse (p.45) and ensure someone knows where they were at all times. However, the latter point was likely be more helpful to family/friends than those with LD who may view this as overly protective and not providing autonomy. In addition, almost all respondents stated that staying away from ‘nasty’ people was another way to avoid harm however those who may cause harm may not be seen as ‘nasty’ given studies indicate abusers are often well known by victims (i.e. family, friends, carers, etc.). Finally, these researchers note limitations in their research not least given participants in the study were referred from advocacy groups and thus already likely to have at least some awareness of reporting abuse/ seeking assistance. One of the key ways to prevent abuse is to ensure all those with LD understand appropriate behaviour and encouraged to talk about any experience. If taught they will be listened to and their views respected, any person with LD will likely have greater awareness and confidence.
The NSPCC have provided an easy-read guide for children with LD and a version for their parents; in the guide, and using the acronym PANTS, the organisation reminds children that their body belongs to them and is private. (Privates are private; Always remember your body belongs to you; No means no; Talk about secrets that upset you; Speak up, someone can help). The guides are simple and easy to understand and importantly, are designed to help children understand that not only is it alright to say no (even to loved ones or professionals) but that they can and should discuss when they are made to feel uncomfortable. Such guides should be available to all children (via schools, health and GP practices, etc.) and their parents to ensure that the message gets through and help those who have LD that there are boundaries; this may then result in more awareness and the confidence to report any abuse.
(4) Good practice in supporting individuals
The British Institute for Learning Disabilities (BILD) had a series of training events in 2012 and 2013 around safeguarding and protecting those with LD and autism designed to allow attendees to “develop an awareness of the types of abuse, the ability to identify signs of abuse, and have a clear understanding of their roles and responsibilities in responding to suspected or alleged abuse”. Such events – when available – should be attended by all relevant agencies who are involved in safeguarding adults and children such as those on safeguarding boards. The Scottish Government produced a guide for those involved with the criminal justice system (2011) who have LD; it acknowledges reporting and engaging with justice agencies may be difficult (an easy-read version is available although no link is given and was not easily located). The guide is aimed at families/carers, professionals within the care/social services sector, advocates as well as those in the criminal justice profession and of course those with learning disabilities.
Another resource available is the website which has a detailed page on reporting hate crime relating to LD; they provide a list of contacts for reporting but interestingly are only available in a very limited number of areas being Birmingham, Cambridgeshire, Derbyshire, Devon & Cornwall (plus the Scilly Isles), Essex, Leeds, Lincolnshire, London (Greenwich, Hackney, Harrow, Richmond, Southwark, Sutton), Manchester, Merseyside, North Yorkshire, Oldham, Wakefield. There is also a Yorkshire and Humber regional page for the Roma community. Another resource is from the Foundation for People with Learning Disabilities (FPLD) – their leaflet on the criminal justice system is for those working with people with LD in England/Wales as well as additional fact; however, there is nothing available (through a search on their website) specifically to aid victims of crime with LD.
The justice system (in England/Wales) provides legislative provision for people who may require additional support particularly in court proceedings; special measures is for any vulnerable or intimidated witness including “those with learning disabilities” which is designed to enable them to give best evidence. The CPS has guidance (July 2009) aimed at those with LD who are witnesses or victims of criminality and notes LD victims may well experience particular types of crime, higher than average rates of crime and face particular barriers to justice. Further, the guidance states “successful prosecutions can only happen if victims and witnesses feel confident and capable of giving their best evidence… [which] is more likely to happen if those involved… understand the particular requirements that people with a learning disability may have”.
Not specific to criminal justice, guidance by the Dept. of Health details the Good Practice Project for those involved with individuals with LD (November 2013); the document states those with LD are more likely to be vulnerable to abuse and gives examples which provide “successful, effective services and support”. It also allows for direct involvement of those with LD including where possible any family/friends who know them best to allow for the “designing and delivering [of] services”. These examples show good practice in Norfolk, Gloucestershire and Oxfordshire as well as cross-borough in London. These practices include unannounced visits to facilities to ensure quality assurance, sharing life stories of those with LD who visit other areas to share stores with others particularly in schools. Also noted were examples of personalised services were provided to individuals moving into adulthood and uses various funding streams. Whilst these are not specifically tailored to those who have suffered abuse, the support structures described can be adapted to the victims of abuse.
Nottingham University (for NIHR School for Social Care Research) published best practice for safeguarding adults with LD; this identifies the views of those with LD – and families – as to their perception of abuse. A number of different scenarios were given; respondents were asked whether they considered the example to be good or poor practice, abuse or if they were unsure; the results indicate two main findings: (1) participants found abuse and poor practice difficult to define and (2) participants did not have a shared understanding of acceptable practice, poor practice and/or abuse. Given this anecdotal evidence, there is clearly a lack of understanding as to what is acceptable which needs addressing. If there is no clarity as to what is or is not acceptable, how individuals know if their experiences are poor practice, good practice or even abuse. In the Looking Into Abuse study, 99% of participants stated it is very important that people are “there for them” with 90% stating having someone available to talk to was supportive. For a high number, support in the form of being believed was very important (96%). The study goes further to state that prevalence figures may be very much greater than those reported for individuals with LD as indications were it is common for abuse, when reported, to be ignored or considered false/inaccurate. The study clearly indicates that in order to provide support, listening to and not judging those who disclose abuse (or potential abuse) is essential.
Understanding firstly how those with LD communicate with others is important; terminology should be non-ambiguous; some with LD may appear abrupt and it is vital that those who support victims of abuse are understanding. Not placing one’s own interpretation onto a victim is essential; the independent living Council in Surrey produced a guide to be given to carers of those with LD. Page eight and onwards provides useful tips on communicating with individuals who have LD. However, many guides do not provide specific and detailed information in relation to identifying sexual (or other types of) abuse; furthermore, easy-read or pictorial guides aimed at those with LD are often difficult to find online requiring searches on websites through a multitude of links which can prove frustrating even for a person without LD and so may prove even more so individuals with difficulties.
Dr McCarthy, from the Tizzard Centre, wrote “it is clear that regarding the prevention of male violence to women with [LD] action needs to be taken at the individual and collective, practice and policy levels” and that “women with [LD] need to be enabled to develop higher levels of self-esteem and assertiveness in all areas of their lives. McCarthy also argues LD services should recognise their own role and responsibility to help women lead fuller and independent lives; sex education needs more emphasis on women’s sexual pleasure and autonomy as well as ensuring at policy level the following actions may reduce women’s risk of sexual abuse whilst in LD services:
• stopping the [then] current practice of placing men with very mild/borderline LD who have a history of sexual offending in services for those with LD;
• increase women-only residential services for those who are vulnerable or simply prefer to be in single-sex environments;
• when recruiting staff/volunteers, ensure attention is given to the values/attitudes which they hold relating to sexual abuse; and
• develop effective citizen and self-advocacy for those with LD.
(5) Recommendations for public authorities, i.e. local authorities, health and police
A research project in Wales had the following aims: develop ways for people with learning disabilities so they could find support following (and help to prevent) abuse as well as to disseminate findings. The paper “Looking Into Abuse” noted recommendations in order to ensure agencies have an awareness and understanding of, as well as respond to, those with learning disabilities/difficulties; these included inter alia:
• personal safety courses being more widely available for those with learning disabilities and which should include more than just sexual abuse including;
• courses should be part of a wider aim of helping people with LD to develop increased resilience;
• when people with LD disclose abuse they must be listened to, believed, appropriate action taken and support given;
• people with LD who have been abused should have greater access to counselling/other therapeutic interventions as soon as is appropriate after the abuse although it should also be available to those disclosing years after the event.
• further research be undertaken regarding the relationship between abuse and suicidal thoughts in people with LD concerning the effectiveness of various post-abuse therapeutic interventions.
• consideration be given as to how such understanding can be achieved and the role that people with LD should play in raising awareness.
Before the College of Policing come into effect, the National Policing Improvement Agency (NPIA) provided much of the guidance, research, etc. including guidance in 2014 on how forces should deal with those who have mental health/learning disabilities which indicates that benefits of adopting the guidance include:
• an improved operational response to victims/witnesses (and criminals) who have LD;
• improved working relationships with agencies who will be (or are already) involved with individuals with LD and increase reporting of offences/victimisation;
• a change in police culture to view those with LD with regard to potential vulnerability and needs; and
• overall benefits include increased victim or witness satisfaction as well as being able to defend organisations from criticisms, legal action or complaints.
HMIC’s various reports into child protection, custody and thematic reviews all indicated the need for forces to ensure there is sufficient provision of appropriate adults for those who are vulnerable (including LD); such should be used when police engage with witnesses or victims with suspected or identified LD; the Criminal Justice Joint Inspectorate published recommendations in January 2014 on the treatment of offenders but could be applicable to victims and/or witnesses:
• criminal justices agencies should jointly adopt a definition of learning disability; and
• both the police and Crown Prosecution Service (CPS) should ensure police decision-makers and CPS lawyers are provided with information about learning disability when making decisions about charging/prosecution [this again may be reflective of how witnesses/victims will be managed both before and after any court proceedings];
The National Autistic Society (UK) has produced a guide for criminal justice professionals (2011) which discusses how to recognise signs of autism and provides information on how those with autism and LD interact with the criminal justice system giving examples. Such guidance/information should be incorporated into police and other professionals’ training to generate more understanding of how learning difficulties and other disabilities can impact upon a person’s perception of and involvement in the criminal justice system.
Conclusion
Overall, websites which provide services/facilities for those with LD do not make links or information clear and what help is available is often linked with other disabilities or ‘added on’ to comply with legislation rather than to ensure services are easily accessible and importantly identifiable.
Bibliography
• A Prevalence Study of Sexual Abuse of Adults by McCarthy & Thompson (1997)
• Sexual Violence Against Women with LD by McCarthy, et al, (1998)
• The impact of alleged abuse on behaviour in adults with severe intellectual disabilities. Murphy et al (2007).
• Drawing a line between consented and abusive sexual experiences. McCarthy M (2003)
• Exploring the incidence, risk factors, nature and monitoring of adult protection alerts. Cambridge P et al (2006)
• Clinical effects of sexual abuse on people with learning disability Sequeira & Hollins. (2003)
• The psychological impact of abuse on men and women with severe intellectual disabilities. Rowsell, A., et al (2013)