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Various intervention strategies have been implemented to try and reduce the risk of sexual abuse in those persons with a learning disability. There is a general consensus that education programmes directed towards the perpetrator are least effective and that techniques aimed at fostering assertiveness and communication in the learning disabled adult are the best preventative measures. In this review I found there to be a significant lack of research that measured the effectiveness of these interventions and further support and investigation is needed into researching these intervention strategies, advocacy and community awareness studies.
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Methods of obtaining research
In recent years the number of articles on ‘sexual abuse in people with a disability’ found in databases such as Medline and Proquest have increased although there is still a considerable lack of quality statistically significant research. Political and media exposure has unsurfaced the need for this group to be protected. For example, the European ‘Valuing People’ agenda unsurfaced serious inequities.3 Some of the most in-depth studies come from research in which women with learning disabilities have been interviewed directly about their experiences including the ground breaking work of Michelle McArthy.3
A number of factors can limit the disclosure of abuse and lead to an underestimation of the extent of this problem. For example, an individual that has had limited exposure to prevention programs and sexuality education may not recognise the abusive nature of sexual contact they have experienced.4 Disclosure may also be inhibited by feelings of confusion, guilt or denial especially if the abuse occurred from a care-giver or a person that was trusted by the victim.4
This paper aims to criticize interventions and assess the most appropriate methods used to help educate those with learning disabilities about sexual abuse and foster prevention rather than looking at ways to support post-abuse. I haven’t addressed the issue on whether sterilization is appropriate in this review as it steers away from the autonomy of the mentally disabled adult and it is more appropriate to concentrate on education as a tool of prevention and looking at the efficacy of training methods.
Method of obtaining papers for literature review
All papers in ‘British Journal of Social Work’, Medline via PubMed and Medline via ProQest from 1995 – 2005. Keywords used were ‘learning disability’, ‘sexual abuse’, ‘mental handicap’, ‘prevention’, ‘intellectual disability’, ‘consent sexual relationships’, ‘learning disabilities’, ‘sexual act’, ‘sexual malpractice’. Search terms were grouped as follows:- ‘education, sexual abuse, disabled’, ‘education, sexual abuse, handicap’, ‘education, sexual, disabled’, ‘assertiveness training, sexuality, disabled’ and ‘sexuality, training, mentally disabled.’ Papers found that concentrated on adults only were used and those articles found on sexual abuse pertaining to children were omitted apart from one paper that examines the use of a Computer-Based Safety Programme that could be useful in educating mentally disabled adults. Papers that addressed interventions used to prevent abuse from occurring were included in the review.
A ‘learning disability’ is defined as “a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in the reduced ability to listen, think, speak, read, write, spell, or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia.”2 Disorders not included are “learning problems that are primarily the result of visual, hearing, or motor disabilities or mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.”2 It is not necessarily the person’s learning disability that makes them more vulnerable to the sexual abuse as to the situation they are placed in so that if we took a person of normal mental capacity and placed them in the same environment the risk of sexual abuse for that person would be greater as well.
Sexual Abuse refers to any form of sexual contact to a vulnerable party and violates the victim’s rights as they are not fully aware of the situation. Sexual exploitation is evident when done by anyone in a position of trust or authority towards a person or where the victim has a relationship of dependency with the perpetrator.
There are various definitions of sexual abuse used in the literature and widely diverging definitions tend to be used in studies of adults with intellectual disabilities.5 Brown and Turk (1992) also distinguished between non-contact and contact abuse. Another definition of sexual abuse was “any sexual contact which is unwanted and/or unenjoyed by one partner and is for the sexual gratification of the other”.6 This is still ambiguous as sometimes sexual contact is misunderstood and it could still be enjoyed it is just that the victim is unaware of what the full extent of the act means. I believe that a better definition of sexual abuse is any sexual act performed on a victim in a position of vulnerability. That is one party is not fully aware of the act being performed and there is an imbalance in power. Could this then exclude those persons with an intellectual disability from having a relationship with a person of normal mental capacity? Perhaps, if there is balance in the relationship and the learning disabled adult can make decisions in other aspects of the relationship this would be a more equally distributed balance of power and this person may be able to fully make decisions on relationships at their own accord. There are varying degrees of mental handicap and this makes research difficult as ethical dilemmas on whether there is full consent and understanding of sexual contact can be ambiguous. However, there are also clear cut cases such as when a disabled person is institutionalized or the primary care-giver is the perpetrator. For the purpose of this review it is important to move more onto preventing the abuse in those that are vulnerable and critiquing methods used to empower those with disabilities rather than focus on the definition of abuse. Protection of those that are in a more vulnerable position and empowerment of individuals already victims of abuse should be fore-front in the social literature.
Prevalence of Sexual Abuse
There is an increase in the prevalence of sexual abuse in children with learning disabilities. A study conducted by the US National Center on Child Abuse and neglect (1993) found that caregivers abused children with disabilities 1.7 times more than children without disabilities.11 The violation of children can foster the development of low self-esteem and lead onto abuse into their adult lives. A research study by Sobsey found that the risk estimate of abuse of people with disabilities may be as high as an increase of five times greater than the risk for those that aren’t disabled.8 A study by Zemp (2002) found that 64% of female and 50% of male participants were sexually exploited and that disabled room mates were the predominant group of perpetrators for the male and third important for the female participants in the study.9
The statistics in the current literature does vary and “the wide variation in the figures is due to differences of abuse, the differences in the populations sampled and differences in research methods.”7
For children with disabilities the risk factors for sexual child abuse are increased. A child with a learning disorder has more difficulty in understanding and communicating and has an increased level of vulnerability. As they are unable to understand tasks as well as other normal children of the same age they are often brought up with low self-esteem as their care givers perform more of the tasks for them than they would for other children. This also leads onto a greater vulnerability and increased risk of sexual abuse than what is seen in children of the same age and normal development.1 This low self-esteem can continue into adulthood resulting in the learning disabled adult also possessing low-self esteem and greater risk factors of vulnerability in comparison to other adults.
For those adults with intellectual disabilities there is a difficult balance to be met between empowering the individual to make their own sexual choices and to be leading more of a normal life and to claim their sexual rights and protect them from sexual abuse.4 Murphy et al (2004) suggests that services should be guided as to whether a person has the capacity to make their own sexual choices, however, the ability to assess this capacity to consent hasn’t been clearly defined. It is obvious that a caregiver would be taking advantage of their position of trust and it would be defined as sexual abuse. However, relationships outside this sphere are much more difficult to assess. Sexual acts between two adults of diminished mental capacity for instance and with adults outside the care-giving role. A more appropriate definition in this case may be “where a person is used by another in order to satisfy certain needs without being informed or giving consent”. This focus is more on the perpetrator as satisfying their sexual needs while the victim does not gain anything by the relationship so the victim is in a position of vulnerability and may not be able to represent themselves.
Review of Intervention Techniques as a method of preventing Sexual Abuse in the learning disabled adult
Lobbying the Government and changes to policy
The manner in which sexual abuse is dealt with in a community reflects the way disabled people are regarded by in society. A report was released in 2004 that spoke about the changes the government is try to initiate as part of the ‘Valuing people: Moving Forward Together’ project.12 According to the Health and Social Care Act 2001, an annual report must be given to Parliament on learning disability. The Leaning Disability Task Force report for 2004 was called ‘Rights, Independence and inclusion’ and addressed the Sexual Offences Bill. Part of the Bill that talks about capacity and consent was changed to reflect the rights of people with learning disabilities to a full sexual life. The British Home Office is now working on helping others understand the Sexual Offences Act fully. Change has taken place and inclusion in helping to form government policy can be considered ‘morally and ethically the most appropriate form of education’. The acceptance of the disabled person as an individual is important not only at school level but right through to parliament.
Behavior modification in the learning disabled adult; empowering the victim
It has been suggested that programs aimed at re-educating the perpetrator have had little success and interventions aimed at modifying the behavior of the victim have a much greater success at reducing the risk of sexual abuse in adults with learning disabilities (Bruder et al, 2005). To be able to protect themselves against perpetrators, the adult with learning disabilities needs to learn how to assess whether a situation is inappropriate, must have the assertiveness to say no and seek help and to report the event. The eleven papers chosen for review are listed in Table 1 in the Appendix.
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Burke et al, 1998, suggested that one way a care provider can lower the risk of sexual abuse in a learning disabled adult is to help provide functional communication skills. The adult may use their own form of communication whether this be symbols or words and their form of communication should be encouraged so that they are able to express their needs. Communication is empowering to the individual and enables them to be able to get a message to their Caregiver. Often those with intellectual disabilities are hard to understand and the carer should ask themselves if they have tried to read non-verbal behavior or begun to establish an alternative form of communication. Burke et al, 1998, also suggested that it was the Carer’s role to provide sexual education to limit the risk of abuse. This education then becomes a way of communicating the common language of sexual health. It is important that the individual understands what appropriate sexual behavior is and understands how to trust their feelings by ‘validating, rather than dismissing or minimizing, them’. The person also needs to be made aware of the appropriate forms of touch so that they can maintain and understand personal boundaries. Burke has suggested that these adults need to have a plan for when somebody doesn’t obey their personal boundary rules so that they are able to get themselves out of the situation and avoid sexual abuse altogether. It doesn’t mean being afraid of strangers but learning how to remain safe. Burke has suggested ways of empowering the learning disabled adult and reducing the risk of sexual abuse. These methods may not be useful when the caregiver is the perpetrator and it could be suggested that a teacher outside the carer role provide this type of education so that the individual is then able to recognise when a person in close association with them has crossed personal boundaries. It does not give ways to avoid abuse altogether and aims to reduce the risk when the person knows what types of behavior is inappropriate and requires reporting. The main downfall of Burke’s research was that she didn’t quantitatively measure the reduction in risk of introducing a communication skills program so further research is needed to assess whether the implementing education on sexuality and encouraging communication strategies actually lower the incidence of sexual abuse.
Earle, (2001), agreed that those with learning disabilities are especially vulnerable to sexual abuse due to the disabled person’s dependent environment, difficulty in articulating their abuse and understanding when abuse has taken place. She suggested that ‘whilst disabled people have the right to be protected from sexual abuse and exploitation, it could be argued that a concern with this risk should not be used as a smokescreen to deny disabled people their sexual identity.’ Earle also postulated that by not discussing sexuality and creating an atmosphere where ‘sexuality is taboo’, this may in fact increase the incidence or worsen the experience of the sexual abuse. Earle also found that nurses tended to think of their disabled patients as asexual and in denial did not address the sexual needs of the patient at all. She also found that disabled individuals have been unable to access information and services on sexuality. Earle admits in this paper that ‘the purpose of this paper has not been to provide answers’,’ nor has it been possible to explore all of these issues in depth’ but to show that the issue of sexuality should be given greater emphasis in a holistic health care framework. The missing link is whether empowering the disabled individual to make their own sexual choices and discover their own sexual identity actually reduces the incidence of sexual abuse.
Teaching refusal skills to sexually active adolescents was introduced in a study by Warzak et al (1990). The training was given to sexually active handicapped female adolescents who lacked an effective refusal strategy. Role-plays were used to help teach effective strategies using ‘the who, what, when and where of situations which resulted in unwanted sexual intercourse.’ The skillfulness and effectiveness of the subjects’ refusal skills were judged to be improved as a result of the training. This study did not have a control group. The research did have a long-term follow up after 12 months and this showed a decrease in sexual activity for each girl.
Singer (1996) introduced a programme to seven intellectually disabled adults that lived in a residential group home. The programme consisted of weekly sessions of assertiveness training, group exercises, role-plays and information giving. The participants had previously been subjected to verbal, physical and emotional abuse by previous members of staff and Singer aimed to teach them how to respond appropriately and assertively in situations of abuse. The trainers assessed each client individually to evaluate how they would initially act in a situation of abuse and also measured their social behavior, assertiveness skills, use of verbal and non-verbal behavior and reading and writing skills. They were given ratings on assertiveness in each role play and it was found that after the training was implemented, the participants did not show improvements in scores where authority figures were the perpetrators but that an overall general improvement in assertiveness scores was established. The staff did comment that the residents showed an increase in confidence, communication and positive attitude post-intervention. This type of study would be great implemented on a larger scale. The difficulty in establishing whether this research has been effective is due to the small numbers. The long-term effects of the trainings are also unknown as there has not been any follow up study. The research study is lacking statistical analysis and a control group so it is difficult to assess whether the trainings actually reduced the risk of further sexual abuse.
Mazzucchelli (2001) introduced a ‘Feel Safe pilot study of protective behaviors programme for people with intellectual disability.’ The programme was designed to increase personal safety skills by teaching ways of recognizing unsafe situations and developing a range of coping and problem-solving skills. This research study implemented the use of a control group. There were ten participants in each group. This intervention program was originally developed in the 1970s for children and was then used in this research study with learning disabled adults. Another main focus of the training was “Nothing is so awful that we can’t talk to someone about it.” The training programme involved the research group participating in role-plays and then evaluating how they behaved to promote self-regulation of behavior as well as using the role-plays in real, everyday situations. Questionnaires were used to evaluate quality of life and protective behavior skills and conducted by assessors that weren’t involved in delivery of the programme. The experimental group did show a statistically significant increase in performance on the Behavioral Skills Evaluation in comparison to the control group from pre-test to follow-up suggesting that the programme did improve favorable behavioral skills but did not improve the participant’s quality of life. The six-week follow up may have been too soon to appropriately evaluate any change in quality of life. Mazzucchelli also had a small number of participants which led to difficulties in showing statistical significance for the research. The themes which showed the greatest increase from pre-test to post-test were “we all have the right to feel safe”, “it is acceptable to be non-compliant or ‘break rules’ during an emergency and self-assertion skills.
The researchers Lee et al (2001), examined the effectiveness of a computer-based safety programme for children with severe learning difficulties that could be implemented into an adult training programme. Three groups were established. One group was offered the safety programme, one was a control and the third group was given the intervention programme much later in the study. All of the participants were tested for cognitive ability and knowledge of personal safety concepts pre-training. Two post-tests were conducted 1 week and 2 weeks after the safety programme. There were 18 candidates in the control group and 31 children in the experimental group. None of the schools had previously implemented formal personal safety training programmes although some of the teachers had started to discuss personal safety with their students. The computer programme went through role-plays illustrating types of behavior and the experimental group was divided into ‘less able’ and ‘more able’ depending on cognitive ability. The researchers used two interviews to establish the student’s perception of authority figures and their knowledge of personal safety. MANOVA analysis found authority to have an independent effect on the respondent’s safety scores and this authority awareness was independent of the participant’s cognitive ability. These researchers found that those involved in the safety programme have significantly improved their knowledge of safety concepts and maintained this increase in knowledge for 15 weeks. There was also a statistically significant result in those going through the programme for the skill of ‘being able to tell someone’ and the study illustrated that they would repeatedly tell someone even after being dismissed the first time and they could also provide a reason for this disclosure. The research showed that there was no significant increase in knowledge attained by the control group leaving these untrained students as potential targets by perpetrators. Lee et al (2001) also found that the increase in knowledge post-training was greater in the ‘more able’ group so that training may need to be repeated for those with lower cognitive ability. By the end of the programme all the students were able to produce a list of people that they would tell if they experienced an incident. The researchers also explored the importance of acknowledging authority issues when designing a personal safety programme. This research illustrates that learning disabled students can benefit from training programmes on personal safety. The implementation of these programmes with adults may prove beneficial.
Education of teachers, health care providers and caregivers
Howard-Barr et al (2005) explored the beliefs in teachers regarding sexuality training of mentally disabled students. The researchers also investigated the range of sexuality topics they would teach and their professional preparation. The participants in the study believed that sexual education should be taught, they rated their current delivery as inadequate and expressed that they needed much more preparation. The number of participants was moderate (n=494) although only 206 candidates actually returned the questionnaire resulting in a response rate of 42%. There were 36 sexuality topics presented and out of the top 6 most important skills, the concept of personal skills was rated the highest. Teachers of mentally disabled students rated personal skills topics such as finding help, assertiveness, communication and friendship more important than human development topics such as reproduction, anatomy and body image. Subjects such as masturbation, human sexual response and shared sexual behavior were the most neglected topics. The limitations of this study included the inability to assess the quality of teaching and whether the teacher was actually addressing any specific areas of the 36 topics. This research topic did not address the effectiveness of education as a risk reduction method for sexual abuse however it did examine the beliefs of the teachers in the type of topics covered in sexuality education of mentally disabled students. It also revealed a general feeling of professional inadequacy in this area.
Fronek et al (2005), conducted a research study that examined the effectiveness of a Sexuality Training Program for patients post-spinal cord injury. They found that there was evidence to support consideration of the client sexuality and a lack of training given to caregivers in this area. This study evaluated the attitudes of staff before and post-sexuality training. The researchers based the training on the Specific Suggestions and Intensive Therapy (PLISSIT) model. The sample group (n=89) was divided into a control group and experimental group randomly. A series of one-day workshops were conducted to the experimental group. Topics covered included identification of professional boundaries, limit setting, maintaining boundaries, development of sexual identity and case studies. This training programme was not focusing on the prevention of sexual abuse, rather the education of staff to being able to be open and teach their patients about sexuality. The staff assigned to the treatment group showed a significant improvement on all subscales of the KCAASS (Knowledge, Comfort, Approach and Attitudes towards Sexuality Scale) post-training and these changes were still significant three months later. In comparison, the control group did not show any significant changes on the KCAASS. Those patients suffering from spinal cord injury are not necessarily affected cognitively and may be only physically affected so this study is limited in assessing how sexuality training of staff could benefit the needs of people with a learning disability. The training was conducted over a one day period and a longer programme may be more beneficial to staff. There was a reporting bias shown by the control group as they were not assigned to receive training initially and the researchers believe that feelings of resentment and a tendency to over-estimate knowledge resulted from being assigned into the control group. Whether improvements can be maintained for longer periods of time (>3 months) is uncertain and refresher courses may be necessary. The research did not examine the effect this education has on the patient in improving their own sexual identity and further studies would be useful in examining whether this limits the risk of sexual abuse. The PLISSIT model has been widely used to implement staff training and sexuality rehabilitation interventions within various clinical disciplines and could be an effective model to use to train carers of mentally disabled people. This model also allows for staff involvement according to level of comfort, previous knowledge and counseling skills.
Rogow (1998) discusses the impact of different forms of abuse in two case studies and expresses the need for comprehensive preventative or pro-active intervention strategies. The author discusses the release of an education campaign that consists of a video, handbook, workshop series and public service announcements for broadcast media that is aimed as a preventative to educate people involved with disabled youth. These publications are not specifically addressing prevention of sexual abuse in mentally disabled persons although, these forms of media could be used to help foster community awareness of this subject. The effectiveness of these media releases has not yet been evaluated and requires research. The video and handbook is being supported by government and private agencies and made in co-operation with parents and organizations advocating for the rights of people with disabilities.
Leicester & Cooke (2002) expressed a need for further advocacy to those individuals to whom the giving of informed consent is difficult (individuals who are most likely to be among those labeled as having ‘severe learning disabilities’). These researchers also suggest that advocates, in representing other people, must attempt to work out what the learning disabled person would choose and not necessarily what they would choose. Advocates needs to have high levels of empathy and the ability to know when and how to set their own beliefs and values aside. Assessing the ability to use advocacy to reduce the risk of sexual abuse in learning disabled persons is yet to be researched.
Recommendations for social work practice at local level
There are several great projects currently in place that foster the empowerment of the learning disabled adult to help them protect themselves and also to be able to make their own choices about sexual relationships. For example, The Disability Pride Project explores avenues that promote safety and support by promoting awareness within the community and developing healthy sexuality workshops for people with disabilities.10
This group teaches community specific advocacy and self-advocacy skills, organizes workshops for personal attendants and institutions about sexuality in the lives of people with disabilities and creates opportunities for young women with disabilities to be mentored by older women with disabilities.10 These educational sessions could be implemented by Social Workers, carers and other educators internationally to foster empowerment in the learning disabled adult to help prevent abuse and instill confidence and responsibility in both the disabled adult and the caregivers. In this review I have critiqued papers that have researched the effectiveness of education of both the carer / teacher and the learning disabled adult and it is evident that there is an extreme lack of research in this area and there is a need for more statistically significant, large numbered studies that investigate the effectiveness of intervention strategies.
The studies on interventions used to prevent sexual abuse in those with a learning disability are limited. There is some suggestion from the research that advocacy and changes to policy will help to encourage greater understanding of learning disabled people in the community. Greater awareness can foster independence and boost self-esteem which may then lower the risk of sexual abuse in this minority group. Some of the research papers presented in this review have shown that intervention strategies such as improving communication skills in the learning disabled and education of both staff and carer may be beneficial. The implementation of behavioral strategies including role-plays may help the intellectually disabled person gain an increase in confidence, assertiveness and develop a strategic plan if placed in danger of a sexual predator. These training programmes could be introduced by the social worker or some other authority figure apart from the actual care-giver as there have been cases where the carer is actually the perpetrator of the abuse. More studies of greater numbers using both an experimental and control group are necessary to determine whether these intervention strategies will be successful at significantly reducing the risk of sexual abuse in the learning disabled adult. Although, an increase in confidence and assertiveness in these people would also be a great benefit so even if the studies are unable to show significant risk reduction of sexual abuse the training could positively influence other aspects of their lives.
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