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Parents’ and carers’ views
on how we can work together
to prevent the sexual abuse
of disabled children
“You fear everything that is out of your control.
Because you are their safe one”
Anita Franklin, Alex Toft, Sarah Goff
September 2019
Acknowledgements
We would like to thank all of the parents who gave up their time
to talk to us about this difficult subject. Often their motivation
to take part was to highlight this important issue and support
the development of resources and responses to help parents
care for their disabled children. We hope that this report
supports change.
We are particularly grateful to the parents and staff at the
special school who provided an advisory role for this study and
made us feel welcome. Thanks must also be given to the
regional Parent/Carer forum for their support and guidance,
and to numerous professionals who supported us to reach
parents in a short space of time.
We are grateful to NSPCC for funding the study and recognising
the importance of hearing the views of parents/carers of
disabled children and young people who are rarely given a
platform to speak about these issues. NSPCC is an independent
charity funded overwhelmingly by voluntary donations. NSPCC
is very grateful to the generous support of our donors who
make this work possible. Every childhood is worth fighting for.
The NSPCC thanks the peer reviewers who generously donated
their time to review this report.
Contents
Summary 4
1. Introduction 7
1.1 Link to broader NSPCC work 7
2. Background 8
2.1 Objectives of the study 9
2.2 Methods 9
3. Findings 10
3.1 Parental concerns about keeping their children safe 10
3.1.1 Increased vulnerabilities 10
3.1.2 Vulnerability to targeting and grooming by gangs 11
3.1.3 Concerns about their child’s safety when accessing services or the community 11
3.1.4 Concerns regarding online safety 12
3.1.5 Concerns when their child reaches independence and adulthood 12
3.1.6 Complex communication needs 13
3.2 Parental views on what support/resources would help them in keeping their children safe 13
3.2.1 Support to help facilitate communicating with their child about sexual abuse 13
3.3.2 Resources for parents, and resources for use with children 15
3.3.3 Partnership with schools and other service providers to create more protective factors
around the child 17
4. Insights for practice and policy developments 19
References 23
Appendix A 25
4 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
Summary
This research was commissioned by NSPCC to
better understand how to best engage with parents
and carers of disabled children, including children
with physical and learning disabilities, and complex
communication needs, when it comes to keeping their
children safe from child sexual abuse.
Research identifies that disabled children are three to
four times more likely to experience abuse (Jones et
al, 2012). Professionals, communities and parents all
play important roles in keeping disabled children safe
from sexual abuse. Despite the important role that
parents play, there is a lack of research evidence on
how parents understand and address issues around
child sexual abuse, particularly preventing child
sexual abuse. This study aimed to address this gap
in understanding in order to provide better support
for parents.
Thirty parent/carers1 (predominantly mothers) of
disabled children took part in this qualitative study,
choosing to take part in either interviews or discussion
groups. Their children (aged between 4 and 21 years)
have a wide range of impairments, predominantly
these were learning disabilities and autism (and
represented the spectrum of both autism and learning
disabilities). Some children had physical disabilities,
learning difficulties, complex communication
needs and complex health needs. The needs of the
children varied from moderate to significant, and
they attend both mainstream (30%) and specialist
education (70%).
Insights from the interviews and
discussion groups
Parents’ concerns about keeping their
children safe
All parents expressed concerns about keeping their
disabled children safe and they all recognised the
increased vulnerabilities of their children due to
their impairments making it difficult for them
to recognise or respond to danger or abuse –
although it should be noted that the onus should
not be placed on children to keep themselves safe.
For other parents their concerns were exacerbated
because their children needed support with
personal intimate care. Parents reported, however,
that this increased vulnerability was a subject that was
often not discussed amongst parents. One father
stated that “It is like, you don’t really want to let it [the
thought of abuse] enter your head really”.
Parents raised specific concerns regarding disabled
children and their family’s vulnerability to being
targeted, groomed and exploited by gangs within
the area.
Across the sample there were very few parents
who stated that their child went out alone or
accessed any community activities where they
were not also present. Fear of what might happen to
their child meant for some parents denying their child
access to freedoms. Other parents raised concerns
about potential abuse in care services such as
short breaks.
Social media was even more of a concern for most
of the parents interviewed, with many not allowing
their children access. They all still had concerns
about what their children might access accidentally,
particularly whilst at school (especially on YouTube).
In one case a child had secretly created multiple
Facebook accounts – 18 active ones. The young
man had little comprehension of potential grooming
online yet could set up the accounts with ease. This
highlights the fact that some young people have
excellent technical skills but lack the social
and emotional awareness to contextualise and
anticipate the risks they face.
The parents were aware that they were in some
cases over-protective of their children, but they
felt a responsibility to do all they could to prevent
them from harm. Many parents were aware that
over-protection of their child was not an ideal or
long-term strategy for keeping their children safe.
Many were concerned about their child’s safety from
abuse once they reached independence, or when
they themselves would be no longer able to protect
their child.
1 For ease of reading we refer to parents, however, this does include carers with a parental role, such as foster carers and extended
family members with caring responsibilities.
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 5
Parents whose children had complex needs raised
particular concerns regarding how incredibly difficult
it was to teach their children about issues such
as safe touch in their intimate care, puberty and
changes in their bodies and about sexual abuse.
Their greatest fears were that their child would not
be able to communicate if they felt unsafe. These
parents spoke about their need to know that the
professionals around their children were thoroughly
vetted, trained and supervised to prevent abuse. It
was also highlighted as being important that these
professionals were able to spot signs of abuse and
changes in their child’s behaviour, and be able to
raise the alarm if needed. Others raised concerns that
some children relied on the same professionals
to access communication such as interpreting for
BSL (British Sign Language) and thus they needed
access to means of communication that did not rely
on a small number of individuals.
Parental views on what support/resources
would help them in keeping their children
safe
The majority of discussion focused on parents
expressing the challenges they face in communicating
with their children about child sexual abuse, and
how any support to help to facilitate this would be
welcomed. Some parents were particularly concerned
about their child saying or doing things which might
be deemed inappropriate, such as displaying sexual
behaviours or touch in the community or at school
because they had misunderstood the information
they had been given, or could not comprehend
social cues and social boundaries.
Others expressed that we do not live in a culture that
encourages conversations about sex and child sexual
abuse and thus it is a taboo and too sensitive a
subject to discuss, especially when considering
disabled children. There was a call to normalise
such discussion and bring it out into the open and
for parents to be encouraged and supported to
have these conversations. Some parents were
honest in expressing their own discomfort in
talking about sex and potential sexual abuse.
Although there is only a small sample, fathers in the
study were particularly uncomfortable with having
these conversations.
Few parents had received any support to help them
discuss these issues with their children, although
some had tried to do their own research online.
Access to workshops (in schools, children’s
centres, or via parent groups) was one suggestion.
Others wanted guidance on specific issues such as
parental locks on gaming consoles. Development of
a variety of resources to meet the variety of access
needs of their children was seen as vital. Many
parents commented their children were visual learners
and needed resources which were not abstract, whose
visual content could aid learning. Others made use
of social stories in other contexts, and felt that this
approach might work well in terms of supporting
children to understand the nuances of social context.
Learning through play and toys was also mentioned
for younger children or those with a developmental
delay. Other parents recalled safety campaigns
from their own childhood and recommended
similar activities.
For some parents, they also felt that what was needed
was somewhere where they could go for advice
on handling these issues. A couple of parents,
however, wanted assurances that this place would be
a safe environment to ask questions and where they
would not need to fear reprisals. Others felt parents
should be given more knowledge of the signs of abuse
and what to look out for as this was also a gap in
their knowledge.
Given the spectrum of needs and abilities of
the children represented within the 30 families
interviewed, not surprisingly, there was a lot of
discussion about how certain approaches or resources
might not be accessible to individual children, and
therefore there was not a “one size fits all” solution.
Parents wanted their children to learn how to keep
safe but also stated very clearly that they also do
not want to frighten their children and were
concerned about graphic images. They felt that
messages had to be clear and not complicated. What
was requested was a step-by-step process focusing
on concepts of private space, puberty and then
increasing in complexity, where possible, concerning
healthy friendships and relationships, sex and then
sexual abuse but tailored to their child’s age and/or
developmental level.
6 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
Partnership with schools and other service
providers to create more protective factors
around the child
Parents highlighted the importance of quality
sex and relationship education in schools, but
in their experience the quality varied. It was
not always clear to parents whether their child had
received this, or whether this education had been
made accessible so their child could understand it.
Many parents felt it most probably focused on biology
and sexual reproduction rather than understanding
important areas such as consent, healthy relationships
and abuse.
Some parents discussed how when some schools
taught sex and relationship education this
presented a good opportunity for parents to be
more involved and aware of what these lessons
contained. Some parents wanted to be able to follow
up on these lessons to ensure their child understood
what was being taught, or be prepared for the
inevitable questions that their children would ask.
The majority of parents reported that any education
and prevention work needed to be a partnership
between schools, parents and other practitioners
in young people’s lives.
Some parents noted the role that school nurses or
family support workers could/should have in this
area, but they had not experienced them undertaking
this area of work with parents, or indeed their children.
Parents felt that professionals, and especially
teachers, need to be better informed about the
signs of abuse, and should be more open to
listening to the children and be able to pick up on
changes in behaviour.
In conclusion, ten actions for change
were identified by the parents:
1. Improved understanding and awareness of the
need for sex and relationship education for all
disabled children and young people, and the need
to break the taboo surrounding the sexuality and
abuse of disabled people.
2. All schools should deliver accessible sex and
relationship education for disabled pupils, which
develops appropriately with the children’s age
and understanding. Access to this education
should be included in children’s Education, Health
and Care Plans (EHCPs) and monitored as a
measurable outcome.
3. Schools and multi-agencies should work in
partnership with parents to ensure that disabled
children receive consistent, clear, accessible
information on safe touch, choice and control,
puberty, sex, relationships and abuse, and
knowing how to let others know when they
feel unsafe.
4. All disabled children should have access to
communication methods and communication
tools which enable them to have a level of choice
and control, and access to a number of people
who understand their communication method as
a safety mechanism. This should be included in
all EHCPs.
5. For children’s support plans, including EHCPs to
be holistic and to address social and emotional
needs including relationships, choices, sexuality
and healthy relationships. And for disabled
children to be helped to understand behavior that
hurts, that they have a right to be safe and have
help to learn about who and how to let know if
they do not feel safe.
6. Transition planning and preparing for adulthood
should include sex, relationship and safety
education as it earliest stages and to be a
monitored outcome.
7. The development of more accessible resources
in multiple formats, which address all elements
to support disabled children’s’ safety. Resources
should be developed for children, their parents
and professionals.
8. Parents to have opportunities to discuss these
issues and share ideas in a safe and sensitive
environment via workshops or support groups.
9. Better understanding, training and a consistent,
balanced approach to avoid what is deemed
“inappropriate behavior” by disabled children
leading to unnecessary criminalization or
inappropriate investigation.
10. Improved training for professionals to spot the
signs of abuse of disabled children and prioritise
the prevention and protection of disabled children
and their families in service settings, and within
the community where they are particularly
vulnerable to targeting by gangs, and all forms of
criminal exploitation.
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 7
1. Introduction
This research was commissioned by NSPCC to
better understand how to best engage with parents
and carers of disabled children, including children
with physical and learning disabilities, and complex
communication needs, when it comes to keeping their
children safe from child sexual abuse. Specifically,
this research sought to consider their views on how
to communicate with their children about child sexual
abuse and deliver effective prevention activities. In this
context we refer to parents, however, this does include
carers with a parental role, such as foster carers and
extended family members with caring responsibilities.
1.1 Link to broader NSPCC work
The NSPCC and external partners are developing
place-based approaches2 to prevent child sexual
abuse, combining NSPCC resources and evidence
with local resources and expertise to help realise a
shared vision of keeping children safe.
The core principles by which the programme activities
will be tested, are:
• Co-creation through relationships with children
and families, local partners and community
members,
• Continuous learning and use of evidence to be
the best we can,
• Strengths-based, building from individual,
community and service strengths, respecting and
honoring what is good,
• Inclusivity and accessibility ensuring diverse
representation of community members during
creation, consultation and delivery,
• In partnership, sustaining effective partnerships at
all levels,
• Sustainability by embedding local ownership,
value and capacity.
This research linked with the place-based approach
operating within an area in England. In line with
the place-based approach, the research sought to
develop an evidence-base which would support the
partnership to build an approach to preventing child
sexual abuse that works for the local area. Seeking
the views of parents, building on their expertise
and understanding their needs are seen as vital
components of a place-based approach.
2 For an explanation of NSPCC’s placed-based approach to the prevention of child sexual abuse see https://www.nspcc.org.uk/
globalassets/documents/about-us/nspcc-together-for-childhood-goal-1.pdf
8 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
2. Background
Although it is difficult to establish prevalence of abuse
of disabled children and young people, research
identifies that this group of children are three to four
times more likely to experience abuse (Jones et al,
2012). For sexual violence, estimates of prevalence
are 8 to 9 per cent of all children, however, when
examining the prevalence of sexual violence in
children with learning disabilities specifically, the figure
rises to 15 per cent (Jones et al, 2012). Disabled
children are also more likely to experience the negative
aspects of social media than their non-disabled peers
(Miller and Brown, 2014).It is also known that the
abuse and effects are more likely to go unnoticed than
with non-disabled peers (Stalker and McArthur 2012,
Taylor et al, 2015). The vulnerability of disabled young
people continues into adulthood with, for example,
disabled women and men at significantly higher risk of
domestic abuse (Thiara et al, 2012).
Despite the known increased risks, there is a dearth
of research specifically on the sexual abuse of this
group of children. Practice can be informed by a few
recent studies on disabled child abuse (for example,
Taylor et al 2014, 2015; Franklin et al, 2015; Franklin
and Smeaton, 2016) and on published serious case
reviews (Brandon et al, 2012; Spicer, 2018). These
studies highlight that risks are heightened because
professionals often struggle to identify abuse of
disabled children where support can be too focused
on needs relating to disability and thus signs of
abuse are missed. In addition, child protection can
be seen to be solely the concern of social services
and outside the remit of other agencies involved in a
disabled child’s life. Risks can be exacerbated because
it can be difficult for children with communication or
learning needs to express themselves, or have access
to people who can understand their communication.
Sometimes their attempts to express themselves
can be interpreted as “challenging behaviour” or
“risky behaviour” without a consideration of potential
safeguarding concerns. The high levels of bullying,
isolation, disempowerment and discrimination of
disabled children and the significant impact on
mental health and emotional wellbeing also creates
vulnerability. High thresholds for support and the
invisibility of the vast majority of disabled children
and young people to most services can mean that
they become specifically targeted for abuse and
exploitation, as they remain under the radar (Miller and
Brown, 2014).
Major issues such as the isolation and
disempowerment of disabled children in their daily
lives, and lack of service provision, need to be
addressed on a wider societal level. Specific attention
also needs to be given to training multi-agency
practitioners in safeguarding disabled children so
that these professionals can spot the signs of abuse,
whilst considering and genuinely listening to all forms
of communication. Disabled children need accessible,
safe ways to speak out about their concerns, but they
also need professionals who will listen and create
spaces where communication can be facilitated
(Jones et al, 2017).
The increased risk presents particular challenges
in terms of keeping this group of children safe
from sexual abuse because of the need to work
in individualised ways and to plan and prepare
discussions to meet individual learning styles and
understanding. Professionals, communities and
parents all play important roles in keeping disabled
children safe from sexual abuse. Despite the
important role that parents play, there is a lack of
research evidence on how parents understand and
address issues around child sexual abuse, particularly
the prevention of child sexual abuse. Little is known
about what services, advice and support they access,
what they feel works well, and where they feel there
are gaps. Equally, attention has not been paid to
understanding how parents see their role more broadly
or understand the wide range of steps they may need
to take to keep their children safe. Furthermore, little
has been done to understand how to support them to
develop healthy relationships, and how they engage
with others on these issues. Parents have a role in
communicating with their children about staying
safe, however, it is also important that the onus is not
put on children to act to stay safe. Children are not
responsible for their own abuse.
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 9
The work by Briggs (2006), Hollomotz, (2011) and
Franklin et al (2015) highlight that it is crucial for
disabled children and young people to have personal
safety skills programmes and sex and relationships
information tailored to their needs. This is something
disabled young people see as a need and right.
Disabled young people are often not supported to
understand sex and relationships as there still exists a
culture that assumes that disabled people would not
have, or want, sexual relationships and therefore do
not need help to understand these topics. This only
serves to further disempower disabled children and
young people and render them more at risk.
2.1 Objectives of the study
This study aimed to address the gap in understanding
identified above:
Key objectives were to develop:
• Understanding of how parents of disabled
children keep their children safe from sexual
abuse, including but not limited to how they have
conversations with their children around this.
• Understanding of how parents of disabled children
view efforts of professionals and community groups
to prevent child sexual abuse.
• Understanding of what parents of disabled children
feel are the most effective ways to keep their
children safe from sexual abuse, and where they
feel there are gaps.
• Understanding of how parents of disabled children
prefer to discuss issues around child sexual abuse
with other adults and professionals.
• Understanding of who parents go to for advice and
support and how they would like professionals and
other community groups to engage with them on
preventing child sexual abuse.
• Understanding of how community leaders and
professionals can better communicate about
prevention of child sexual abuse, for example,
through campaigns, events and through more
general conversations.
2.2 Methods
Following a review of existing research, 30 parents
were recruited to the study via a wide range of
mainstream and specialist schools and services. The
parents were given a choice as to whether they wished
to take part in individual interviews or discussion
groups. A full description of the methods, ethical
approach and sample is included in Appendix A.
10 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
3. Findings
In order to keep the parents’ views central, the findings
are presented according to the issues or questions
which they identified as being most important. These
provide important context to their lives. In some cases,
this goes beyond the identified research questions
and thus in the conclusion, we will re-examine the
findings in light of the overall objectives of the study
and these new insights.
As noted, the literature exploring parental views on
working together to prevent child sex abuse is limited
and rarely presents parental voices themselves.
For ease of reading we have incorporated existing
evidence below alongside the views of the parents in
this study.
The findings presented below are themed into:
1. Parental concerns about keeping their children
safe.
2. Parental views on what support/resources would
help them.
3. Parental views on how professionals should
support them.
3.1 Parental concerns about keeping
their children safe
All parents expressed concerns about keeping their
disabled children safe and these extensive worries
dominated many of the interviews and the focus of
discussion within groups. Despite it being known that
intra-familial abuse presents a much higher risk for
disabled children, most parents did not approach this
subject (possibly due to sensitivities of this subject,
the group setting and/or not wishing to think this
was a possibility). Most parents focused on concerns
about potential abuse from strangers or outside
caregivers. Further exploration of this was beyond the
scope of this study.
3.1.1 Increased vulnerabilities
Ballan (2012) in an article exploring parental
perspectives on communication regarding sexuality
for families of children with autism spectrum disorders,
found that for parents, the primary fear is that their
child will be sexually abused:
Parents identified numerous reasons for their
children’s vulnerability to sexual abuse including
an inability to judge other’s negative intentions,
limited communication skills and dependence on
multiple caregivers. (Ballan 2012:681)
The author noted that parents desired additional
knowledge about preventing sexual abuse and found
that they were keen to enhance their own skills in
detecting abuse. It is clear from Ballan’s research that
parents viewed their children as potentially vulnerable
and prone to “taking risks”.
In our study, all parents interviewed were also acutely
aware of the increased vulnerability of their children,
often making comparisons to their non-disabled
siblings or their non-disabled peers.
I think parents will always worry about their
child, but when it is disability it is even more. It is
amplified.
People taking advantage of them. Definitely. It is
there but we don’t openly talk about it. That is a
worry for all of us.
The parents highlighted particular vulnerabilities in
their children. These included how their child’s learning
disability, complex communication needs, ADHD or
autism affects their ability to recognise danger or
risk. In addition, many parents highlighted how their
children wanted friendship, loved to interact with
people and wanted to give and receive affection;
yet often struggled to understand the nuances of
social interaction and social boundaries, or recognise
potential dangers:
The amount of children on the spectrum
especially, take everything literal. I am your friend,
OK. Stranger Danger type thing, it is just. I don’t
think they get it. What they say, they believe.
Physically, my daughter looks like a little lady
but what concerns me, she is a crazy child, she
is so complex, because she will go to a random
person, hug you, kiss you, sit on your knee. That
worries me.
She believes anything anyone tells her, if someone
offered her a lift she would get in the car, if they
had a dog in there, she would be straight in so
she is vulnerable that way but I think because
she reads loads, she speaks intellectually so
people think she’s quite old but she’s quite young
headed really. I do worry. They’re not allowed to
go anywhere.
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 11
The parents reported that this increased vulnerability
was a subject that was often not discussed amongst
parents. One father stated that “It is like, you don’t
really want to let it [the thought of abuse] enter your
head really”. This is explored further below.
For other parents their concerns were exacerbated
because their children needed support with personal
intimate care. This created additional vulnerabilities
for their child who might have multiple carers. This
also increased complexity in trying to explain to a
child, and instil a sense of safe touch, personal space
and privacy.
XXX has problems with his personal care so I
have to, sort of, say to him, “That area is your own,
however, if you need help from me, you know, it’s
okay for me to wipe your bottom, or whatever.”
You know, it’s a bit of a difficult one, isn’t it?
Because there will be plenty of children who need
that sort of help and that’s another area where
they’re vulnerable as well, isn’t it? You know, with
personal care.
Of particular concern to some parents was the
emphasis that schools had placed on developing
their children’s social and independence skills. This
was of course welcomed, however, this had not been
accompanied by developing their understanding
of keeping safe in social and emotional situations.
Understanding safety in friendships and relationships
with potential partners, and understanding social
and emotional cues were issues that were not widely
discussed. There was a feeling that this could increase
their vulnerability. Parents gave examples of how their
children now had no boundaries or understanding of
their social interactions and would approach strangers.
3.1.2 Vulnerability to targeting and grooming
by gangs
Other parents raised specific concerns regarding
disabled children’s vulnerability to being targeted,
groomed and exploited by gangs within the area:
Because he is so meek and timid…too nice. And
wouldn’t always understand the motives behind
what the person is trying to communicate to
them. You know, for instance, there is quite a gang
culture in this city as well. We have got one on
our estate. And they are very clever at getting the
young boys…to manipulate them by being friendly,
giving them stuff…
This concern is not without some foundation as
research has highlighted the increased risk and
specific targeting of disabled young people by gangs
(Berelowitz et al, 2012; Children’s Commissioner,
2019). There was also conversation within one
discussion group where parents raised concerns that
vulnerable families with disabled children were being
targeted and the whole family were being groomed.
3.1.3 Concerns about their child’s safety
when accessing services or the community
There were very few parents who stated that their child
went out alone or accessed any community activities
where they were not also present. Sometimes parents
were required to stay with their child at activities at the
organiser’s request because they felt unable to meet
the child’s needs, parents also stayed at activities
out of concerns for what might happen if they were
not present. Fear of what might happen to their child
meant, for some parents, denying their child access to
freedoms, which they described some of their peers
and siblings experienced freely.
Parents whose child met the threshold to access
short breaks expressed general concerns about
potential abuse in such services. Parents held differing
views as to whether they should use these services
and manage the risk to their child. Some parents
stated that they would never access short breaks,
some did so with considerable reservations. Some
parents suggested that it had divided their family,
with one mother explaining that she went against her
husband’s wishes because she thought it was vital for
independence and for their family to function.
I think we are a lot more suspicious, and we
scrutinise everything. You are thinking why is this
person like this, why is my child behaving a certain
way when they have come back from respite, what
has happened. She can’t tell me, and then you
start thinking and over thinking so many things,
the possibility of what it could be. But you are
never really going to get to the bottom of it.
For me it is respite. If she goes into respite I
don’t know what is happening. You hear so many
disgusting things.
12 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
Some parents had gone to great lengths to ensure
that their child was safe when they had carers come
into their home.
We had respite at home and we installed cameras
in the house for that reason, until they went.
Nothing ever happened but it was just for me for
those 2 hours while they were there. My son was
so young, he still wouldn’t be able to explain. So I
would check it every time that I would come home.
Just so I knew he was safe.
3.1.4 Concerns regarding online safety
Given the vulnerabilities identified above in the “real
world”, unsurprisingly the online world was even more
of a concern for most of the parents. Although some
parents felt that the level of their child’s impairment
meant that their children would not be accessing the
internet or social media.
The majority of parents stated that they neither
allow their child to go online nor play online games
nor access social media. Those who did monitored
their use at home carefully. However, many parents
had concerns about what their children might
access accidentally (especially on YouTube), or the
possibilities of them being groomed online.
A number of parents had experienced their
child accessing what they had considered to be
inappropriate material whilst at school. Parents had
then faced challenging circumstances trying to
explain to their child what they had seen, even though
they felt they were not old enough or cognitively able
to understand the material.
Parents were also acutely aware of the peer pressures
that their children face to be online. Such an online
presence is part of the culture of social media which
is prevalent in the lives of many of their peers. Yet
parents felt their children were unable to understand
the online world fully.
They think this person is my friend so they will give
them this information.
A small minority of the parents felt able to trust their
children to know the difference between genuine
friends and potential groomers online. These parents
were able to have conversations about the need to
know the person before allowing them to befriend
you. They also trusted their child to raise any concerns
with them.
I think it depends on the relationship you have with
them. I have always been very careful what he goes
on. And we have got a good conversation around
what he is accessing, who he is adding as friends.
So we have quite a good conversation around that.
He is quite switched on. He will come and ask me if
he is worried or concerned about something.
However, other parents shared concerns about online
safety based on experiences of their children speaking
with people on Facebook, which neither the parent nor
their child knew. In one case a child secretly created
multiple Facebook accounts – 18 active ones. The
young man had little comprehension of potential
grooming online yet could set up the accounts with
ease. Previous work by NSPCC has highlighted the
increased risks online (Miller and Brown, 2014). Some
young people have excellent technical skills but lack
the social and emotional awareness to contextualise
and anticipate the risks they face.
3.1.5 Concerns when their child reaches
independence and adulthood
The parents were aware that they were in some
cases over-protective of their children, but felt a
responsibility to do all they could to prevent them
from harm.
I think we are all over-protective. All of us. That
is the only thing you can do. What else can you
physically do?
For me I just keep [name] with me, always. He
comes to school and any other time really he is
with me.
However, many parents were aware that over-
protection of their child was not an ideal or long-term
strategy for keeping their children safe. Many felt that
they were postponing the inevitable time when their
children would need to be independent, would want to
have their own relationships and would need to learn
about sexual abuse. There were some exceptions
to this, with the example of one father who was
determined that he would always be there to protect
his child. In his opinion there was no need to educate
his child about these issues:
I don’t see the point if I am always there.
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 13
Most parents were keen to express that although they
were concerned about their child in the present, their
adulthood and future life was also never far from their
minds. Some expressed that they knew their children
would eventually get sexual feelings and want to seek
out information and experiment. Parents felt it was
therefore better to protect their child and provide
them with appropriate information to support them.
Others were particularly concerned about their child’s
safety from abuse once they reached independence,
or when they themselves would be no longer able to
protect their child.
I don’t think it is just at this age. They are going to
be vulnerable for the rest of their life.
Especially these children. If they are always going
to have a barrier, in the case of understanding. All
their life they are going to be vulnerable.
One of the biggest fears that nobody probably
mentions is what is going to happen when we are
not here. That is…for me that is the biggest fear
I have.
Although a concern for most parents, this was
particularly acute for parents of children with complex
needs who would require high levels of support for
their whole lives.
3.1.6 Complex communication needs
Parents whose children had complex needs raised
particular concerns regarding how incredibly difficult it
was to teach their children about issues such as safe
touch in their intimate care, puberty and changes in
their bodies and about sexual abuse. Their greatest
fears were that their child would not be able to
communicate if they felt unsafe:
Every single one [of the children] that we have just
spoken about is vulnerable. They cannot speak,
they cannot tell us when things happen in general.
My issue is that she is so complex that she will
never ever get to that stage. So it all depends
where the child is. Her classes will never ever do
subjects like that.
In addition, they expressed concerns that their child
might not recognise abuse if they did experience it:
They wouldn’t know that something has happened.
These parents spoke about their need to know
that the professionals around their children were
thoroughly vetted, trained and supervised to prevent
abuse. It was also highlighted as being important that
these professionals were able to spot signs of abuse
and changes in their child’s behaviour, and be able to
raise the alarm if needed. Others raised concerns that
some children relied on these same professionals to
access communication such as interpreting for BSL
(British Sign Language), and thus they needed access
to a means of communication that did not rely on a
small number of individuals. One parent explained that
her son used Makaton3 to communicate, yet there
were no staff in his school that could use Makaton.
As a result the child had no means of communicating
with anyone.
3.2 Parental views on what support/
resources would help them in keeping
their children safe
Parents welcomed the opportunity to discuss support
and resources that they thought would be of use, and
which could enhance what they were already doing.
Three areas emerged:
1. support for parents to help them to communicate
with their children about these issues,
2. resources specifically for parents, and visual
resources directed specifically to their children
3. partnership with schools and other service
providers to create more protective factors around
the child.
3.2.1 Support to help facilitate
communicating with their child about sexual
abuse
The parents focussed on the challenges they faced
in communicating with their children and how any
support to help to facilitate this would be welcomed.
It is just so hard to explain. The understanding is a
massive barrier. Speech isn’t a normal thing.
How do you say what is right and what isn’t? That
would be difficult to explain to them.
3 Makaton is a language programme using signs and symbols to help people to communicate. It is designed to support spoken
language and the signs and symbols are used with speech, in spoken word order.
14 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
For some parents, this was because their children
did not use speech to communicate or they had
significant learning disabilities. For others, their
children had a literal interpretation of information and
therefore it was difficult to explain the complexities
of, for example, grooming, which specifically utilises
manipulation and deception. In addition, being able
to transfer and apply learning to multiple situations
and contexts presented another challenge. Some
parents were particularly concerned about their child
misunderstanding information about social cues and/
or boundaries and then behaving in a manner that
might be deemed as inappropriate in the community
or at school (such as displaying sexual behaviours or
touch). As one parent stated:
We need them to know this information, but then
we don’t want them to go out and do something
inappropriate and get into loads of trouble for it.
A couple of parents were particularly concerned
about the possibilities that this kind of incident could
lead to consideration of the need for child protection
enquiries if there were concerns that a child may be
at risk of significant harm (under Section 47 1989
Children Act) where they would be blamed for their
child’s behaviour. As will be detailed below, parents
called for the need in understanding their child’s needs
and learning style so that information could be given
in accessible ways. This could be achievable through
the repetition and layering of information, and the
use of context so that incidences such as this could
be avoided. Many parents expressed how they were
starting at a basic level of a “private area”, although this
was not without challenges, particularly for children
who relied on personal care.
For some parents whose children had less significant
needs, their concerns rested on the fact that their
child’s body had developed faster than their cognitive
development. As a result, their children needed to
be supported to understand their body changes and
puberty;
I think their bodies are more mature than their
minds so it must be really difficult for them
because they’re going to be getting sexual urges
and things, well just starting off to get them
anyway… that’s quite normal, but I don’t know if
they quite know how to cope with those which is
why I’m glad that we are very open and they can
come and ask me anything and they have asked
me some corkers let me tell you.
Other parents whose children possibly had a higher
level of cognitive ability spoke about the importance
of the relationship they had with their child and how
it was important for them to be open, honest and
answer any questions their children asked. They were
also keen to highlight how they had to be available
and ready to answer questions whenever their child
was curious. This presented opportunities to discuss
often difficult or embarrassing subjects. The issue
for some parents was therefore the need to be
ready and prepared to respond when asked. This
was juxtaposed with their other children with whom
they could initiate a conversation. For these parents
the issue was responding well at the time the child
sought the information and seeking to avoid the child
becoming distracted.
For me, because he is transitioning [moving
to college] and he is going to be a bit more
mobile around the community and everything.
He is starting to ask more questions about
relationships, what a positive relationship looks
like. So we are having to have conversations
with him around that. But very much at his level.
And I have to repeat a lot of things constantly
because sometimes the concepts just don’t
sink in. So we have to revisit things. So he is
curious and he has got lots of questions. Like
you are saying, it is knowing how to handle them
sometimes. I do look things up on the internet,
look for ideas how to speak to him sometimes. I
can see him asking questions and I can see him
not quite understanding what I am trying to tell
him sometimes.
In the discussions, parents raised a number of
concerns about finding it difficult to talk about child
sexual abuse. For some, the concern that this might
happen to their child was something that they tried to
avoid thinking about:
We don’t openly talk about it I don’t think, not
me personally. It is a worry that is there, but me,
because I worry about so much I don’t talk about it.
I avoid talking about a lot of things because I know
if I talk about things I will get upset, and cry, so we
avoid it. There are times when I’ve talked about
issues and I’ve been sobbing. Because I am fine
getting on with it. Soon as I start talking about my
children I get so emotional and upset, exactly for
that reason.
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 15
Others expressed that we do not live in a culture
that encourages conversations about sex and child
sexual abuse. Therefore, it is a taboo and too sensitive
a subject to discuss, especially when considering
disabled children. There was a call to normalise such
discussion and bring it out into the open and for
parents to be encouraged and supported to have
these conversations.
It is one of those things you don’t really talk
about it.
Some parents were honest in expressing their
own discomfort in talking about sex and potential
sexual abuse.
I don’t think I feel comfortable about the sex talk.
Although there was only a small sample, fathers in the
study were particularly uncomfortable with having
these conversations. One felt that his wife was best
placed to have conversations. As described before,
another father felt it was unnecessary as he would
always be there to protect his child and wanted to
keep his child’s innocence.
My wife would probably better word it, if she was
talking to her. I would be like blah, fumbling a bit.
It is one of those things, how do you approach
it? What do you say? It is one of those things you
don’t really think about approaching. I know it
needs addressing. I know they do education at
school. The birds and bees and whatnot. But I
am not sure they touched on that subject. It is
something you don’t really want to talk to your
daughter about really. It is there but it is one of
those things you don’t really want to go over…. I
know she is 16 but I see her as a lot younger.….
Despite these concerns, most parents agreed that:
You can’t shield them so you have to be open and
honest with them because you’re making them
feel ashamed about their bodies and it’s not going
to help the situation.
Few parents had received any support to help them
discuss these issues with their children, although
some had tried to do their own research online.
Almost all parents welcomed the possibility of support
in this area, particularly if their child’s school were
teaching these subjects.
No, not directly. Only stuff that I have found. I
suppose from an educational angle that would be
useful, if they are starting to do the conversation
or approach those topics, perhaps send a
parental leaflet…
Access to workshops (in schools, children’s centres,
or via parent groups) was one suggestion put forward
by a number of parents. This would enable parents to
share their concerns, learn tips on how to start to have
conversations or hear about different approaches
and resources to support them. It was also suggested
that parents of disabled children would be good
facilitators/co-facilitators to these workshops as
they have personal experience and would be able to
empathise with fellow parents.
I’d say other parents who’ve been through it
because I always give anybody the time of day
and say well have you tried this or what about this.
Because you never know it might be the answer if
it isn’t you haven’t lost anything.
3.3.2 Resources for parents, and resources
for use with children
As detailed above, some parents indicated that they
had sought advice online looking for resources to help
them to communicate with their child about sexual
abuse. Overall, the parents reported having little
success. Others wanted guidance on specific issues
such as parental locks on gaming consoles as they
had been unable to find useful information.
Aside from the NSPCC PANTS4 materials, few parents
had found any resources which they felt could support
them. Some of their children had received a talk at
school on the NSPCC PANTS awareness campaign
which was well received by parents.
It is quite fun, it doesn’t scare the “bejesus” out of
him. It makes them think if they see the pants…
about not touching them in that area.
The multiple NSPCC PANTS materials, which aim to
help parents start vital conversations about staying
safe from sexual abuse with children aged eight and
under, was seen by parents as not necessarily meeting
the needs of all of the children in these families.
In addition, the message of PANTS is deliberately
simple and specific, and is not intended to meet
4 https://www.nspcc.org.uk/preventing-abuse/keeping-children-safe/underwear-rule/
16 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
wider needs for greater understanding of sex and
healthy relationships and of child sexual abuse.
Notwithstanding the limitations of PANTS, some
parents thought an online app version of PANTS would
be good.
You could make a game where you get dressed
and undressed and when you get to the pants it
says, no they are mine.
Some parents had suggestions about what would
help them, including that an accessible online game or
app might meet some of the needs of their children. It
was suggested that children are given scenario-based
options which might help them to understand private
space, and to recognise situations where they might
be in danger, or need to alert someone.
You’ve got two things where you have like a
situation, which one is right, you tick it, ding!
For other parents, having access to basic picture
cards were identified as being useful. Or simply having
materials available in the communication format
that their child used such as PECS5 or Makaton, was
highlighted as important. Many parents commented
that their children were visual learners and needed
resources which were not abstract, and whose visual
content could aid learning. Others made use of social
stories in other contexts, and felt that this approach
might work well in terms of supporting children to
understand the nuances of social context. Learning
through play and toys was also mentioned for younger
children or those with a developmental delay. Overall,
it appeared that parents would welcome having
access to a wide range of resources that could prompt
conversations or understanding.
Other parents recalled safety campaigns from their
own childhood and recommended similar activities:
I don’t know if anyone remembers the information
adverts you used to get on telly, crossing the road
and Stranger Danger, we don’t get half of them
now. I think they were really good because I still
remember, from being a kid – Charlie and the cat.
They were done in such a way that I thought, I’m
not going off with a stranger. It was still aimed
at kids.
For some parents they also felt that what was needed
was somewhere where they could go for advice on
discussing these issues. A couple of parents, however,
wanted assurances that this place would be a safe
environment to ask questions and where they would
not need to fear reprisals.
I think, if parents are concerned about sexual
abuse, any type of abuse...I think parents won’t go
and seek support from professionals because they
are terrified of safeguarding and they are terrified
of children being removed. And I think that is the
biggest barrier that we will always have.
Others felt parents should be given more knowledge
of the signs of abuse and what to look out for as this
was also a gap in their knowledge.
Given the spectrum of needs and abilities of
the children represented within the 30 families
interviewed, not surprisingly, there was a lot of
discussion about how certain approaches or resources
might not be accessible to individual children. It was
clear that there was not a “one size fits all” solution.
Parents wanted their children to learn how to keep
safe but also stated very clearly that they also
do not want to frighten their children. They were
concerned about graphic images being used in
education. They felt that messages had to be clear
and not complicated. Parents suggested that what
was required was a step by step process focusing
on concepts of private space, puberty. The process
would then increase in complexity, where possible,
concerning healthy friendships and relationships, sex
and then sexual abuse but tailored to their child’s age
and/or developmental level.
I just think if you tackle it from all angles.
Knowledge is power isn’t it. You are putting it
out there.
I would like it from all angles. I would like school
to initiate and then we would carry it on at home
I would even like something online, because they
like to think about things so they lodge in. Just the
little game thing, or the app. I’d like them to think
about it.
5 PECS (Picture Exchange Communication System) allows people with little or no verbal communication to communicate using
pictures. People using PECS are taught to approach another person and give them a picture of a desired item in exchange for
that item. By doing so, the person is able to initiate communication.
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 17
3.3.3 Partnership with schools and other
service providers to create more protective
factors around the child
Parents highlighted the importance of quality sex and
relationship education in schools. However, in their
experience the quality of such education varied. It was
not always clear to parents whether their child had
received this information, or whether this education
had been made accessible so their child could
understand it. Many parents felt it most probably
focused on biology and sexual reproduction rather
than understanding important areas such as consent,
healthy relationships and abuse.
I would say particularly for our kids, the social
and emotional wellbeing is a far more important
subject than coming away with something in
maths. How to protect yourself…
Rather than forgetting because they need a lot of
repeating again and again, telling them the same
thing. Like with pictures, they might learn better.
One parent raised the point that in her son’s school
the teachers were not trained and felt out of their
depth in teaching about sex and relationships. It was
noted however, that they were trying to remedy this:
[Name’s] school are putting into place because he
is also asking his teachers a lot of questions about
sex, they don’t know what to do with that because
a lot of their children are non-verbal so they’ve not
really come across it so they are like oh we don’t
know what to do….you just need to give him some
sex education, he’s thirteen!
Some parents discussed how when some schools
taught sex and relationship education this presented
a good opportunity for parents to be more involved
in and aware of what these lessons contained.
Some parents wanted to be able to follow up on
these lessons to ensure their child understood what
was being taught, or be prepared for the inevitable
questions that their children would ask. Some parents
were especially concerned to raise the issue that in
some cases their children could verbally repeat what
they had been taught but may not understand it or be
able to put what they had learnt into practice.
In terms of us having stuff, I mean like when they
do sex education, you know in early years they are
going to do teeth cleaning- a pamphlet will come
round with a little toothbrush and prompting and
things. Is there any difference? That we will be
covering these bits and we have these websites
that you can have a look at.
They planted the seed, he was asking questions,
and that started it off. Rather than you going, right,
sit down we are having this conversation. He is
asking you.
The majority of parents wanted any education and
prevention work to be a partnership between schools,
parents and other practitioners in young people’s lives.
Other research has also called for such partnerships
(Skarbek, 2009; Gougeon, 2009). As an example,
the work of PACE (Parents Against Child Sexual
Exploitation) in particular has focussed upon parents
as partners in safeguarding children. Although the
focus has not been upon disabled children, PACE
(2016) have clearly argued that parents are crucial
partners in tackling abuse. Shuker and Ackerly in
a report written for PACE, focus upon the role of a
Parent Liaison Officer (PLO) who offer flexible one-
to-one support with parents to help develop safety
plans. (2017).
Although there was mixed feeling amongst the
parents about the new legal requirement for sex and
relationship education, this was mainly concerned
with whether the content of lessons were age and/
or developmentally appropriate for their children.
Conversations with parents about content and how
this is being layered, and individualised to meet needs,
appeared to be a useful way forward. Overall, there
appeared to be consensus that parent group sessions
in school settings or accessible settings might be
helpful. As one parent stated, it is a conversation.
Even a parent group session you could do. Even
when we were doing a group Makaton session, a
lot of parents came in to learn, from school. They
got taught it first to the teachers, then they taught
us. Something on those lines, from the parents
side. That is a possibility.
18 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
In one focus group, parents noted the role that school
nurses or family support workers could/should have
in this area. They had not however, experienced them
undertaking this area of work with parents, or with
their children.
Parents felt that professionals, and especially
teachers, need to be better informed about the
signs of abuse, should be more open to listening to
the children and be able to pick up on changes in
behaviour. This was linked to parents’ concerns that
when in education or in receipt of services, they were
not there to protect their children; yet they wanted to
be sure that they were safe in these environments.
The environment, where the children are going, the
respite. It is mainly those people that I think you
need to target and speak to and maybe address.
They are the ones who are supposed to be looking
after these children. They should be able to spot
the signs.
People in education should be taught better. They
should see the signs, a psychiatrist or psychologist
come in once a year…and teach them what are the
signs that a kid might be doing if they have been
sexually abused.
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 19
4. Insights for practice and policy developments
Drawing on the views of the parents, albeit mainly
mothers, and wider literature in the area of disabled
child abuse, the following presents reflections for how
practice and policy should be developed in order to
better protect disabled children and young people, and
support parents and others in their role as protectors
and responders.
It is important to note that parents were able to very
clearly articulate the concerns they have regarding
keeping their children safe. Given the complexities
of the issues, they found it more difficult to identify
simple solutions or what might help. Helping children
to make sense of how people treat each other, and to
know what is abuse is a challenge. As is supporting
them to understand their body as a private space over
which they should have control.
Much discussion rested upon the complexities of
ensuring disabled children and young people are
given such information in ways that suit their learning
and communication style. It was also suggested that
there needs to be a focus upon providing a means to
speak out or have people around them trained to spot
the signs of abuse. Most of the parents recognised
that their children have a right to have relationships
and make choices about these vital areas of life.
Alongside this they emphasised the need for their
children to be helped to understand choices, safety
and healthy relationships, sex and sexuality. They did,
however, see it as a complex area to address. Such a
viewpoint was not universal, as one father who took
part in a focus group stated that he would not give his
son this information as it would not be needed. This
suggested that relationships would not be part of his
son’s life. This insight was in contrast to Ballan’s study
where it was noted that none of the families discussed
their children in terms of ‘potentially being engaged
in normative social or romantic relationships and
sexual behaviour’ (Ballan 2012:682).
The parents we interviewed were highly motivated
in their actions to protect their children and cared
very much about their child’s safety and wellbeing.
In addition, it is important to reiterate the need to
balance the rights and needs of disabled children and
young people to know about dangers, with important
messaging about healthy relationships. This needs to
be done without creating expectations that they are
responsible for their own safety, abuse or for telling
us if they are being harmed. Research has highlighted
the challenges all children face to speaking out about
abuse (Cossar, 2013); disabled children and young
people face additional barriers to being heard and
seen (Taylor et al, 2015).
Not all parents will be as highly motivated to keep
their children safe or have the abilities to undertake
this role due to other demands, for example, if caring
for several children and other family members. The
role of professionals to prevent, identify and respond
to the abuse of disabled children is critical given the
increased vulnerabilities outlined above.
Similarly, in most cases there was recognition by this
group of parents that in order to protect their children
this meant empowering them with knowledge and
information about: safe touch, indicating they felt
unsafe, sex and relationships, privacy, consent and
abuse. However, dominant discourses concerning
disability and sexuality often deny disabled young
people the right to this information, with it often being
seen as something they will not require, nor want,
nor be able to understand. When in many cases the
issue is that it is not offered in the right form, based
on the individual child s learning style, language and
communication preferences, or carried out in ways
that meet sensory and attention needs. In addition,
disabled people are frequently infantilized, or seen
as asexual. In a study by Rohleder they identified a
tension between a human rights understanding of the
need to provide sex education for people with learning
disabilities, and one of wanting to control their sexual
expression (2009).
Dominant discourses need to be challenged so
that there is more awareness and understanding
in the general population. Other parents may have
different values and cultural contexts to this group
of participants about sex and what they consider to
be appropriate and safe – there may even be discord
within families. This is important context as research
has shown that this lack of knowledge in disabled
children and young people creates and increases
their vulnerability.
Many of the parents who took part in this research
spoke of the battles families of disabled children
face to receive support for all aspects of their child’s
education, health and care needs, or to access
community activities for their children. They described
20 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
that this often left little time, energy or “headspace”
to think beyond the immediate crisis and about some
of the wider concerns or long-term needs they knew
they had to address. This included topics such as
reaching puberty or sex and relationships education.
This is the wider context of the lives of many families
of disabled children and is important to consider in
the context of developing support or resources for
parents and their children on this issue. Many parents
in this study found it difficult to think about their own
support needs in this area. They commonly defaulted
to considering what their children needed, and what
they could do with their children.
Parents were acutely aware of the increased risks to
their child’s safety, but they often felt unsupported in
knowing where or how to start communicating with
their child about these issues. Some felt shame and
embarrassment mainly because it still feels a taboo
subject and was something that was not discussed
in their own family growing up. Any support offered
to parents needs to recognise and validate any
feelings of embarrassment, uncertainty and shame,
and indeed recognise that in some cases parents
may have experienced abuse themselves, and may
need support for unaddressed trauma, or may
be retriggered.
It is also important to note that the parents spoke
at length about the important role of schools in
delivering good quality sex and relationship education.
They advocated educators working with parents
more closely to ensure accessible, individualised and
consistent approaches. However, this does present
difficulties for parents whose children are educated
in schools a long distance from their homes and
thus would require good regular communication. It is
also important to note that many disabled children
and children with special education needs are not
in educational settings. Ofsted has highlighted
the significant numbers of children with special
educational needs out of education or being off-rolled
(2018). Suggesting that these children may miss out
on important sex and relationship education and not
have access to pastoral support and professionals
who can support them. It can also increase their
vulnerability to being exploited and abused. This
raises questions about the need for critically
appraising reasons why this group of children are
disproportionately excluded. Furthermore, it questions
whether some aspects of what is deemed “challenging
behaviour” are forms of communication from children
who are scared, seeking support and in some cases
might be experiencing bullying, abuse or exploitation.
Parents in the study tried to protect their disabled
children in multiple ways, which they felt could often
compromise their freedom, and was not a strategy
that would support their children as they grew into
adulthood and needed independence. However, in the
short-term parents felt this was justified or the only
course of action available to them. This has important
implications as this can create social isolation for
disabled children, and creates a false sense of safety.
This also indicates the vital role of support, and sex
and relationships and safety education planning,
for adulthood and independent living in the lives of
disabled young people and must be given a high
priority in transition planning. The evidence highlighted
in the introduction shows that the vulnerability of
disabled people does not stop after the age of 18 or
25 years which are often the current cut off points
of support.
Parents in this study, in the main, wanted to be able
to give their children all the information they could
to make them safe. However, the task could feel
overwhelming as it was felt to be such complex
information with little resources and support to meet
the spectrum of needs, abilities and learning styles
of their children. Any resources or plans for support
which are to be developed need to break down the
stages, starting with simple messages such as safe
and unsafe touch, giving children a voice and choice,
before moving on to more complex messages for
those children who will be able to understand as
they grow up and develop their maturity. Parents
saw protection as being reliant on good quality sex
and relationship education which most thought that
schools would deliver. However, there is no evidence
to suggest that there is a consistent approach to this
across schools. Even within this small group of parents
there was inconsistency in whether this was delivered
within the schools their children attended.
Changes in the law concerning the delivery of sex
and relationship education may help to ensure more
schools deliver this form of education. However, the
quality of this and whether the lessons are made
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 21
accessible to disabled children remains questionable.
One or two lessons per year will not meet the needs
for some disabled children and young people who may
need repeated messages, contextualised information
and help to keep working through meaning.
Although not all disabled children and children with
special educational needs will have an Education,
Health and Care Plan (EHCPs), these could be seen
as a mechanism to ensure that children receive this
information and support. If this is included specifically
within their plan and seen as a measurable outcome of
support (RIP:STARS, 2018).
While schools will have a duty to teach sex and
relationship education, the parents in this study also
saw that they themselves, and other professionals
supporting their child, also had responsibility for
this education. They called for a partnership with
education including increased dialogue so they
could mirror messaging at home, and the sharing of
skills and knowledge. The parents also called for the
development of multiple format resources to support
them in communicating with their child.
They also felt it was important for their children to
have access to communication methods which grow
with the child’s changing needs, and can support
them to indicate if they feel unsafe. And for those
who are supporting their child, to understand their
child’s communication so that the child has safety
mechanisms around them, and people who they could
indicate to that they felt unsafe.
Parents also felt that the opportunity to talk openly
about these issues in a safe environment would be
useful, bearing in mind the need for sensitivity and
wider support mechanisms being available if required.
However, it should be noted that in the main the
sample were female carers, and thus the perceptions,
understanding, views and needs of fathers/male
caregivers should be further explored. The fathers in
this study found the topic area particularly challenging.
Parents also wanted the protection of disabled
children and young people to be given a higher priority.
The parents wanted to feel confident that those
working with and supporting their child were safe.
The parents raised a number of incidences where
practice had been poor. They called for better training
for professionals regarding identifying the signs of
abuse and improved responses. This included the
need for a contextual safeguarding approach as they
had particular concerns about disabled young people
and their families being targeted by gangs in the area.
Some parents also questioned why the police, social
media companies and other agencies were not doing
more to tackle the perpetrators of abuse of disabled
children. They highlighted how parents can only do
so much.
22 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
Similarly, the parents identified a need for improved
understanding regarding what might be deemed
inappropriate behaviour of their child when quite often
this was part of “normal” learning and experimenting
and part of their child’s need to learn and have clear
messages about where and when, for example it is
appropriate to touch their genitals. This frightened
a number of parents who were concerned that their
child, or the family would get into trouble. Thus they
called for a proportionate response and thorough
investigation and understanding of the context to
avoid situations escalating too quickly. This again
stresses the need for education and other agencies
to work in partnership with families to ensure that
communication and messages to children are
consistent and clear to aid their understanding.
In conclusion, ten actions for change were identified
by the parents:
1. Improved understanding and awareness of the
need for sex and relationship education for all
disabled children and young people, and the need
to break the taboo surrounding the sexuality and
abuse of disabled people.
2. All schools should deliver accessible sex and
relationship education for disabled pupils which
develops appropriately with the children’s age
and understanding. Access to this education
should be included in children’s Education, Health
and Care Plans (EHCPs) and monitored as a
measurable outcome.
3. Schools and multi-agencies should work in
partnership with parents to ensure that disabled
children receive consistent, clear, accessible
information on safe touch, choice and control,
puberty, sex, relationships and abuse, and
knowing how to let others know when they
feel unsafe.
4. All disabled children should have access to
communication methods and communication
tools which enable them to have a level of choice
and control, and access to a number of people
who understand their communication method as
a safety mechanism. This should be included in
all EHCPs.
5. For children’s support plans, including EHCPs to
be holistic and to address social and emotional
needs including relationships, choices, sexuality
and healthy relationships. And for disabled
children to be helped to understand behaviour
that hurts, that they have a right to be safe and
have help to learn about who and how to let know
if they do not feel safe.
6. Transition planning and preparing for adulthood
should include sex, relationship and safety
education as it earliest stages and to be a
monitored outcome.
7. The development of more accessible resources
in multiple formats, which address all elements
to support disabled childrens’ safety. Resources
should be developed for children, their parents
and professionals.
8. Parents to have opportunities to discuss these
issues and share ideas in a safe and sensitive
environment via workshops or support groups.
9. Better understanding, training and a consistent,
balanced approach to avoid what is deemed
“inappropriate behavior” by disabled children
leading to unnecessary criminalization or
inappropriate investigation.
10. Improved training for professionals to spot the
signs of abuse of disabled children and prioritise
the prevention and protection of disabled children
and their families in service settings, and within
the community where they are particularly
vulnerable to targeting by gangs, and all forms of
criminal exploitation.
Although this study has importantly filled a gap in our
understanding of the views of parents of disabled
children about sexual abuse, as noted above there
are limitations to the sample. It is thus important to
continue to seek the views of parents as they are
underrepresented in research. Future studies should
seek a wider understanding of the views of fathers,
parents from black and minority ethnic groups and
of disabled parents whom we have not been able to
reach in this small-scale study. It is also important
that we seek the views of disabled children and young
people, as well as disabled survivors on what support
they think would be helpful.
Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 23
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Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children 25
Appendix A
Literature review
To understand any existing research in this area
we conducted a rapid review of evidence across
academic and grey (non-peer reviewed) literature.
Professionals and academics within our network were
also approached to ensure new or recently published
literature was not missed. The search criteria included
the following key words and all variations (e.g. for
children, young people, adolescents etc. were also
used): children, sex abuse, parents and prevention. To
ensure we found literature that mentioned prevention,
but might not be the sole focus, we also included key
words such as safety, intervention and advice within
searches. To supplement this initial search, and in light
of the multiple research questions, we also searched
for literature examining sex and relationship education
for disabled children with a specific emphasis upon
parental views.
The purpose of the review was not to provide a
systematic review of the literature; and this would not
have been possible given the divergent nature of the
research questions and short timescale, but to provide
a background and to demonstrate the lack of research
focus in this area.
Although the research questions proposed by NSPCC
were wide-ranging, the search initially focussed upon
any literature pertaining to helping parents to prevent
child sex abuse, specifically in terms of the views of
the parents themselves. The literature exploring the
key issue (Parent’s/Carers views on how we can work
together to prevent the sexual abuse of disabled
children) is limited. Parents’ views and opinions are
rarely heard, and when they are it is often post-abuse
or with little valid parental input. The first search
resulted in the following literature which we have
grouped into thematic areas for ease of reading:
• Models of prevention (without parental input)-
Skarbek et al (2009)
• Models of prevention (focusing upon
professionals)- Philander (2006)
• Risk factors for abuse- Murphy (2011)
• The importance of sex education, parental views-
Stein et al (2018)
• The importance of sex education, professional
views- Tutar Guven and Isler (2015)
• Post-abuse support- PACE (2015), Scott and
McNeish (2017)
• The role of parents alongside professionals in
preventing abuse- PACE (2016), Palmer and
Jenkins (2014), Shuker and Ackerley (2017)
• Professional and parental experiences- YouGov
(2013).
The additional search specifically exploring sex
and relationship education resulted in a number
of additional areas of interest that relate in part to
sexual abuse, albeit through a discussion of the
wider context of knowledge and understanding of
sexuality and disability. The focus of this literature
has predominantly been upon sexual health and
prevention of STI’s, illustrating a medicalisation of
sexuality in disabled young people’s lives
• Parental communication about sexuality- Ballan
(2012)
• Sexuality of disabled persons- Brown and Pirtle
(2008)
• Parental roles (mothers)- Rogers (2010)
• Sexual health- Rohleder (2009)
• Critique of sex education- (Gougeon 2009).
Rather than offering a summary of the literature here,
it is more useful for this report to incorporate previous
research alongside the views of the parents from the
current study.
Parent/Carer Interviews:
Given the sensitive nature of the research questions,
time was spent at the beginning of the research
developing an ethical framework to ensure that
parents were supported pre, during and post interview.
This involved scoping support groups (locally and
nationally), any resources (in hard copy and/or via the
web) and websites which we could direct parents to
should they require it. Ethical approval was sought and
granted by Coventry University and NSPCC’s Research
Ethics Committees.
Time was spent ensuring the interview questions were
accessible, the process was comfortable and that it
supported parents. Advice on the research questions
and approach was sought from a group of six parents
recruited via a special school who volunteered to be
advisors to the project.
Parents were given a choice of taking part face-to-
face or via the telephone, and whether they wished
to be interviewed alone, with someone else present
26 Parents’ and carers’ views on how we can work together to prevent the sexual abuse of disabled children
or in a group setting. Interviews were arranged at a
time that was convenient for the parent. As a thank
you for their time, parents were given a £10 gift
voucher. All parents gave permission to audio record
their interview/group discussion and these were fully
transcribed. Data was analysed thematically.
Recruitment of parents/carers:
Recruitment of parents was undertaken via a number
of avenues: special schools in the area, a parent/carer
forum, short break services and via the local authority
foster care and children with disability teams. Each
service was asked to approach parents/carers of
disabled children and children with special educational
needs. An information sheet and consent form, which
had been designed in partnership with the six parent
advisors to the research, was circulated offering
parents an opportunity to contact the researchers
prior to making a decision to take part. Parents either
gave permission to the service/school for the team to
contact them, or contacted the team directly.
Sample of parents:
A total of 30 parent/carers took part in the study.
In order to protect the identity of participants and
their children, the demographics of the sample have
been aggregated and are illustrated below. It should
be noted that a significant number of parents were
concerned about being identifiable in the report,
especially given the small sample. The limited fieldwork
in this area and the rare nature of the children’s
impairments could potentially be used to identify
parents. Therefore, there is a significant amount of
missing demographic data.
This research was a qualitative study in a specified
geographical area and was not designed to be
representative. However, limitations of the sample
should be noted. Despite attempting to recruit via a
wide range of avenues, there is a lack of diversity in
the sample, especially in terms of fathers/male carers
views. A longer time scale would have been needed
to undertake outreach work to reach fathers. The
lack of engagement with fathers is possibly reflective
of services predominantly working with, or being
accessed by, mothers/females as the main care giver.
Although reflective of the ethnicity of the area in which
the research took place, the sample also does not
adequately reflect the views of parents from black and
minority ethnic groups, or those whose first language
may not be English. In addition, there is a gap in terms
of seeking the views of parents who face specific
barriers to receiving support. Parents who have
learning disabilities, who are Deaf or visually impaired,
or who have communication needs are not well
represented. Their views on the nature of the support
they might need in this area would be welcome in
future research.
Eight (8) parents took part in individual interviews, of
which three (3) were face-to-face and five (5) were via
telephone. There were no differences in the questions
or format/structure of the interviews whether they
were in-person or on the telephone. The remainder
of the sample took part in three focus groups (6
participants, 7 participants, and 9 participants). The
questions and overall schedule remained the same for
the focus groups and the individual interviews.
Interviews were roughly one hour in length, and focus
groups on average were 90 minutes.
Table One: Sample of Parents/Carers
Parental role 24 mothers, 3 fathers, 3 foster carers (female)
Ethnicity of parent 2 British South-Asian, 27 British White, 1 Other.
Numbers of disabled children and
young people within families
Ranged from 1-4 disabled children in a family
Ages of children and young people Range from 4 – 21 years
Gender of children Male (66%) Female (33%)
Type of disability/special
educational need of the child (as
defined by the parent)
Special Education Needs, Complex Communication Needs, Autism,
Learning disability, Learning Difficulties, Dyspraxia, Developmental Delay,
Downs Syndrome, Physical Disabilities, Hypermobility, Cerebral Palsy.
Type of educational setting Special (70%) Mainstream (30%)
©NSPCC 2019. Registered charity England and Wales 216401. Scotland SC037717.
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