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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.
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.l
Definitions
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.
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
Vulnerability
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.
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.
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.
Community awareness
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.
Advocacy
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.
References
1. Abuse of Children with Disabilities. NCFV. Public Health Agency of Canada.
3. Brown, H. 2004. A Rights-based Approach to Abuse of Women with
Learning Disabilities. Tizard Learning Disability Review. Vol 9, Iss 4,
pp41-44.
4. Murphy, GH and O’Callaghan, A.2004. Capacity of adults with
intellectual disabilities to consent to sexual relationships.
Psychological Medicine, Vol 34, Iss 7, pp 1347
5. Brown, H and Turk, V. 1992. Defining sexual abuse as it affects
adults with learning disabilities. Mental Handicapp Vol 20, pp 33-55.
6. McArthy, M. 1993. Sexual experiences of women with learning
disabilities in long stay hospitals. Sexuality and disability Vol 11,
pp 277-286.
7. McCarthy, M and Thompson, D.1996. Sexual abuse by design: an
examination of the issues in learning disabilities services. Disability
and Society. Vol 2, pp 205-224.
8. Sobsey, D. 1994. Violence and abuse in the lives of people with
disabilities: towards prevention and treatment. Centre for Development
and Research. Vancouver.
9. Zemp, A. 2002. Sexual violence against people with handicaps in
institutions. Prax Kinderpsychol Kinderpsychiatr Volum 51(8), pp610-625.
11. Gill, C et al. 2005. Listening to Young People with Physical
Disabilities’ Experiences of Education. International Journal of
Disability. 5: 195-214.
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