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Sexuality and individual support plans for people with
intellectual disabilities
J. M. T. Stoffelen,
1,2,3
M. A. Herps,
1,2,4
W. H. E. Buntinx,
1,5
D. Schaafsma,
6
G. Kok
1,2
& L. M. G. Curfs
1,5
1Maastricht University Governor Kremers Centre, Maastricht, Limburg, Netherlands
2Maastricht University Faculty of Psychology and Neuroscience, Maastrich, Limburg, Netherlands
3Zorgbelang Gelderland en Utrecht, Arnhem, Netherlands
4Vilans, Utrecht, Netherlands
5Maastricht University Medical Centre, Maastricht, Limburg, Netherlands
6Fontys University of Applied Sciences, Eindhoven, Netherlands
Abstract
Background Sexual rights and sexuality are important
aspects of quality of life, also for people with
intellectual disabilities (IDs). However, providing
support in this area to people with ID poses some
challenges. In this study, the content of individual
support plan (ISP) documents was analysed to
determine the extent to which sexuality and sexual
rights are addressed in part of the ISP documents.
Method Content analysis was carried out on a
sample of 187 ISP documents from seven different
service provider organisations in the Netherlands.
First, we conducted a lexical search using terms
related to sexuality and sexual health. The retrieved
segments were then analysed.
Results A total of 159 ISP documents (85%) of 60
men and 99 women contained some reference to
aspects of sexuality. However, these references were
mostly descriptive and offered little guidance in terms
of providing support. Moreover, these notations
mostly described negative or problematic aspects of
sexuality. References to sexual education, treatment,
intervention programs or support strategies were
rarely found in the ISP documents.
Conclusions Although sexuality is addressed in most
ISP documents, there is little information available
about the provision of professional support in this
area that would give people the opportunity to exert
sexual rights. As sexuality and exerting sexual rights
are important for people with ID as well as for other
people, it is recommended that issues surrounding
proactive sex education, shared decision-making and
the implementation of sexual healthcare plans are
addressed in the ISP.
Keywords individual support plans, sexuality,
sexual rights
Background
Individual support planning
Individual support planning (ISP) has become a key
aspect of support for people with intellectual
disabilities (IDs) in many countries around the world
(Schwartz et al.2000; Robertson et al.2007) and is
regarded as a key aspect of person-centred support
(Robertson et al.2007). It refers to the process of
developing, implementing and evaluating individual
1
Correspondence: Joke Stoffelen, Maastricht University Governor
Kremers Centre Maastricht, Limburg, Netherlands (e-mail: joke.
stoffelen@maastrichtuniversity.nl; jokestoffelen@planet.nl).
Journal of Intellectual Disability Research doi: 10.1111/jir.12428
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution
and reproduction in any medium, provided the original work is properly cited.
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goals and objectives in terms of personal outcomes.
The ISP document is the written or digital document
that describes these goals and objectives (Thompson
et al.2009; Herps et al.2013) and thus should reflect
the current support that is provided to enhance
personal outcomes (Thompson et al.2009). The
content of the ISP document should be based on an
ongoing dialogue between staff and the person
regarding the individual’s wishes and preferences, but
research has shown that people with ID are not always
meaningfully involved in this process (Williams &
Robinson 2000; Herps et al.2013; Herps et al.2016a).
Balancing different perspectives and developing an
ISP document that incorporates the provision of
professional support can be difficult when conflicting
interests arise or when sensitive subjects are addressed
(Tuffrey-Wijne et al.2007; Wagemans et al.2010).
For the purpose of this study, we chose the topic of
‘sexuality’as an example of a sensitive and perhaps
difficult subject in terms of providing support for
people with ID and studied the extent to which this
topic is addressed in ISP documents. We are aware of
only one other study that has researched the topic of
sexuality in ISP documents. Stancliffe et al.(1999)
studied the content of 126 ISP documents and found
no individual goals on sexuality.
Sexuality and sexual rights of persons with ID
People with ID have human rights (Stainton & Clare
2012), including sexual rights. The World
Association for Sexual Health (2014) has specified the
number of sexual health rights, including the right to
privacy, the right to sexual health, the right to
marriage and to start a family, the right to decide on
the number of children, the right to information and
education, the right to freedom of opinion and
expression and the right to protection of these rights.
According to the American Association on
Intellectual and Developmental Disabilities
(AAIDD), ‘These sexual rights and needs must be
affirmed, defended, and respected’(in ‘Position Statement
Sexuality’AAIDD 2008).
Definitions of sexual rights
Three authoritative organisations have defined sexual
rights from the perspective of human rights: the WHO
(2015), the World Association for Sexual Health
(WAS 2014) and the International Planned
Parenthood Federation (IPPF 2003). Although not
specifically written for people with ID, people with ID
also have sexual needs, wishes and questions, as well
as sexual rights that need to be addressed (UNCRPD
2006; AAIDD 2008, article 25), and sexuality and
sexual health are as such important and constitute a
part of the concept of quality of life (Schalock et al.
2010). Nussbaum (2014,p.57) describes sexuality as
an essential human capability: ‘Having the opportunity
for sexual satisfaction and choices about reproduction’,
and states that it is important to protect this.
Sexual rights and people with ID
However, understanding sexual rights and exercising
these rights in daily life are not always straightforward
for people with ID. Richards, Miodrag, Watson,
Feldman, Aunos, Cox-Lindenbaum & Griffiths (2009,
p. 211) conclude that ‘sexuality is a complex and
unresolved issue due to the imposition of a social construct
and the continued pathologizing of the disability itself’.
People with an ID experience a variety of problems in
the area of sexuality. They do not always get the respect
and support that is needed (Watson et al.2002; Ignagni
et al.2016). Issues such as overprotection –along with a
lack of skills and knowledge –can make people with ID
vulnerable to sexual abuse (Murphy et al.2007;
O’Callaghan & Murphy 2007; Hollomotz 2011).
Individuals with ID are more likely than the general
population to have had negative sexual experiences or
to have been sexually abused (Abbott & Howarth 2005;
Reiter et al.2007; Hickson et al.2008; Eastgate et al.
2011; Van Berlo et al.2011; Stoffelen et al.2013). People
with ID often face resistance in their direct
surroundings when it comes to exerting their sexual
rights (Bernert 2011; McGuire & Bayley 2011), and the
need for privacy in residential settings is often badly
recognised (Hollomotz 2008). Family members and
other support providers set different norms for
themselves (or other people without disabilities) than
for people with ID (Christian et al.2002; Yool et al.
2003; Swango-Wilson 2008). Information about
sexual rights is often not easy to understand by people
with ID (Abbott 2013), and they receive less sexual
education than people without disabilities (Schaafsma
et al.2013). Furthermore, some people with ID have
difficulties memorising the information that is
presented during sexual education (Löfgren-
Mårtenson 2012). Having had less sexual education or
2
Journal of Intellectual Disability Research
J. Stoffelen et al.•A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
not having had tailor made sex education can result in
people with ID having less knowledge about topics such
as masturbation, pregnancy, safe sex, reproduction and
sexual diversity, as compared with peers without an ID
(Leutar & Mihoković2007; Healy et al.2009; Kelly et al.
2009; McCarthy 2009; Schaafsma et al.2017).
Moreover, the social, communicative and decision-
making competences of some individuals with ID are
limited (Hayashi et al.2011). Finally, although sexual
education materials for people with ID have been
developed, people with ID and their caregivers are
rarely or not involved in the development of such
materials (Schaafsma et al.2015). This is in spite of
research which shows that active involvement of the
target population is one of the conditions for the
development of effective health promotion or
education programs (Bartholomew Eldredge et al.
2016). An example of research involving people with an
ID is the study of Frawley and Bigby (2014).
Aim and research questions
The complexities surrounding sexuality and sex
education, alongside issues regarding sexual rights,
suggest that sexuality is an important issue for people
with ID and should as such be addressed in ISP
documents. Furthermore, Dutch policy
requires sexuality to addressed in ISP documents
(Herps et al.2016a).
.In line with this, the aim of the present study is to
understand to what extent sexuality, sexual health and
sexual rights are mentioned in such documents. The
study has an exploratory and descriptive design. The
research questions are outlined in the succeeding texts:
1To what extent are ‘sexual health’and ‘sexual rights’
mentioned in the ISP documents of people with ID?
2When references are made to sexuality in ISP
documents, what subjects or issues are covered?
3How is support provided to people with ID with
regards to aspects related to sexual health and sexual
rights described in terms of individual support goals?
Methods
Procedure
For the purpose of this study, we used data that were
collected by Herps et al.(2016b). From the original
sample of eight organisations, data of one
organisation could not be used because the authors
could not consult the full ISP document but rather
only an excerpt of individual goals and resources as
described in those excerpts. This resulted in a
sample of 187 ISP documents of people with ID
from seven service providers in the Netherlands.
These organisations all provide residential support to
people with IDs and are located in the north (n=2),
the middle (n=1) and south (n=4) of the
Netherlands. Two organisations provide residential
support to more than 2000 people with ID, four
provide between 1000 and 2000 people with ID
support and one organisation provides less than 1000
people support.
The ISP documents constituted a total of 3444
pages with individual ISP documents ranging
between 4and 76 pages (M=18.42;SD=9.88). The
ISP documents belonged to 95 men with ID and 92
women with ID, aged between 20 and 83 years
(M=43.14;SD=13.97). Table 1shows the
demographic characteristics of the present sample.
Information regarding the degree of the disabilities
was either found in the ISP document or, when the
information was not found in the ISP document, was
provided by the organisation.
Analysis
Content analysis was completed on all 187 ISP
documents. The definitions of sexual rights were used
to develop search terms (Appendix A). A lexical
search using these search terms was carried out on all
ISP documents using the qualitative data software
program MaxQDA. The lexical search identified
paragraphs in which at least one of the search terms
was present.
The lexical search resulted in 6185 segments being
identified, of which 270 segments were found to be
relevant in the context of the research questions.
Selection of relevance was assessed by carefully
reading the segment, determining if it was related to
the research questions and then coding it using a
codebook. For example, 3979 segments were found
in the lexical search for ‘relations’. Many segments in
which this term was found were, however, not
related to sexual relations, but rather referred to
interpersonal relationships with, for example, family
or friends. Search terms that included ‘education’,
3
Journal of Intellectual Disability Research
J. Stoffelen et al.•A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
‘privacy’and ‘rights’led to segments being identified
that were unrelated to the topic of this study. These
segments were not relevant in the context of our
research questions and therefore not included in
the analysis.
We identified eight themes on which segments were
coded. These themes were sexuality, sexual health,
information and sexual education, developing and
maintaining relationships, physical contact, parenting
or the desire to be a parent, privacy and joining an
advocacy group related to sexuality. The relevant
segments were then independently coded on these
themes by two researchers with an agreement rate of
99%. The researchers discussed any differences until
consensus was reached. By using a structured coding
system, all paragraphs were coded. Our analyses are
shown in Table 2.
Finally, any goals that were found in ISP
documents (Herps et al.2016b) were read and coded
as to whether they were related to the topic of the
present study or not.
Results
Relevant segments in individual support planning
documents
Relevant segments were found in 85.0%(N=159)of
the ISP documents. In 77 ISP documents, segments
related to one topic/domain/search term were found;
in 54 ISP documents, we found segments on two
search topics; in 27 ISP documents, we found
segments related to three different search topics; and
in 15 ISP documents, we found segments related to
four different search topics.
Content and nature of references to sexuality in
individual support planning documents
Table 3presents the eight themes that we found,
relating to demographic information of the people
with ID whose files contained information related to
these themes (age, gender and level of ID). The most
4
Table 1 Level of ID and age of people in the ISP sample
Level ID
Age Mild (%) Moderate (%) Severe (%) Profound ID Unknown (%) Total %
20–34 25 (13.4) 13 (7,0) 12 (6.4) 3 (1,6) 2 (1.1) 55 (29.4)
35–49 16 (8.6) 25 (13,4) 18 (9.6) 9 (4,8) 3 (1.6) 71 (38.0)
50+ 11 (5.9) 20 (10,7) 18 (9.6) 8 (4,3) 4 (2.1) 61 (32.6)
Total 52 (27.8) 58 (31,0) 48 (25.7) 20 (10,7) 9 (4.8) 187 (100)
Table 2 Quantitative results of the original lexical search
Results 187 ISP documents Relevant segments
Themes ISP documents (%) Hits (n) ISP documents (%) n
Sexuality 92 (49.19) 236 56 (29.95) 87
Sexual health 116 (63.04) 761 31 (16.58) 53
Information and sexual education 15 (8.02) 17 4 (2.14) 4
Developing and maintaining relationships 184 (98.39) 3.979 20 (10.70) 64
Physical contact 111 (59.36) 404 18 (9.63) 23
Parenting/desire to be a parent 115 (61.49) 321 27 (14.44) 36
Privacy 55 (29.41) 86 3 (1.60) 3
Joining advocacy groups 101 (54.01) 381 0 0
Total 789 (422.91) 6.185 159 (84.61) 270
Journal of Intellectual Disability Research
J. Stoffelen et al.•A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
striking findings regarding the eight themes are
described in the succeeding texts.
Sexuality
We describe the following aspects regarding sexuality:
(non)sexual behaviour (a description of behaviour of
the individual with ID that may look sexual, but is
interpreted as non-sexual behaviour) and sexual
preferences. We also describe findings that indicate
that the individual has been sexually abused. We
found these results in 56 ISP documents.
(Non)sexual behaviour
Eight ISP documents described how the individual
expresses his or her sexual needs (in some
documents, we found information about more than
one expression); masturbation was found in six
(3.21%) ISP documents, the use of specialised sexual
service provision in one ISP document (0.53%) and
the use of porn and chat rooms in three ISP
documents (1.60%). One ISP document described
that the person had used an alternative dating service
but that this has not been followed up as his parents
and group home could not agree upon it. It did not
state how the person is expressing his sexual needs
instead.
Furthermore, several findings relate to a
description of behaviour of the individual with ID that
may look sexual, but is interpreted as non-sexual
behaviour. Refer to, for example, these two quotes:
‘The individual is aware of her body. She is not sexually
active. She does like to be touched and tickled, but this
carries no sexual meaning for her.’(Woman, 45 years
old, profound ID)
‘He has a girlfriend in his group home. This is expressed
in holding hands and often sitting together. He likes to
cuddle;this is not something sexual for him but rather
has to do with attention and attachment.’(Man,
52 years old, moderate ID)
In 13 ISP documents (6.95%), reference was found
to the individual showing inappropriate or inhibited
sexual behaviour. In three cases, this behaviour was
linked to the individual having been sexually abused.
Yet none of these ISP documents contained
information about treatment or support regarding
these issues, nor was there any reference to other
(professional) treatment plans.
Sexual preferences
With regards to sexual diversity, two ISP documents
(1.06%) noted that the individual concerned has
interest in a partner of the same sex.
Sexual abuse
In 12 ISP documents (6.24%), reference was made to
sexual abuse of the individual. Four ISP documents
disclosed that sexual abuse of the individual had led to
trauma. In two ISP documents, treatment of this
trauma was mentioned.
‘Individual has had Psychomotor Therapy in 2006 and
2007. The reason for this was a posttraumatic stress
disorder stemming from alleged sexual abuse. She shows
5
Table 3 Information of the people with ID and the domains
Gender Age Level of intellectual functioning
Themes nMale Female MSD Mild Moderate Severe Profound Unknown
Sexuality 56 29 27 42.39 12.80 11 21 18 3 3
Sexual health 31 2 29 39.87 13.24 11 121 3 5 0
Information/education 4 3 1 39.50 12.42 1 2 0 0 1
Developing and maintaining relationships 20 7 13 43.40 13.90 12 8 0 0 0
Physical contact 18 10 8 42.38 14.10 2 0 7 9 0
Parenting/desire to be a parent 27 8 19 43.74 15.19 11 10 4 2 0
Privacy 3 1 2 49.69 12.04 0 2 1 0 0
Joining advocacy groups 0 0 0 0 0 0 0 0 0 0
Journal of Intellectual Disability Research
J. Stoffelen et al.•A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
signs of impulse control disorder.’(Woman, 46 years,
level of ID unknown)
Sexual health
Sexual health refers to the (access to and use of)
contraceptives. Table 3shows that results were mostly
found in ISP documents of women. In most
instances, contraceptives were used as a remedy for
premenstrual syndrome or problem behaviour during
menstruation. In one ISP document, it was made
explicit that contraceptives were used to prevent
pregnancy. In six ISP documents, it was reported that
the person had been sterilised.
0‘She occasionally fainted (see: Medical). She has had
abdominal pains for a longer period of time. She has
been examined, but no clear answers emerged. She kept
complaining about abdominal pains, leading to
adjustments in her medication and for quite a long time
she used Provera. When she kept complaining about
abdominal pains, she got some extra Naproxen.
Finally, the gynecologist decided with her parents to
operate and remove her uterus. This has been successful,
she no longer menstruates and so does not suffer from
abdominal pains.’(Woman, 34 years old, moderate
ID)
Information and sexual education
A reference to sexual education or information was
found in four ISP documents (2.14%). These were
mostly statements of whether or not the person had
been educated sexually, but most of these ISP
documents (three) did not explain how this is relevant
in current support provision or how follow-up is
provided. For example,
‘He has had sexual education at school. He is interested
in the other sex, age accordingly.’(Man, 20 years old,
level of ID unknown)
Developing and maintaining relationships
Table 3shows that we found segments of developing
and maintaining relationships in 20 ISP documents.
This could be that the person with ID has expressed
that he or she wants to have a boyfriend or girlfriend
or that the person has a boyfriend or girlfriend. Two
ISP documents reported that a legal commitment had
been made. In four ISP documents, it was not clear
whether the boyfriend or girlfriend was a regular
friend or a sexual partner. The ISP documents did
not state how people with ID are supported in their
relationship: They describe that the person is in a
relationship and how it is expressed (e.g. by holding
hands or seeing each other weekly), and only in five
ISP documents, we found minimal information about
the support that is given.
‘She has been in a relationship since 2003. This is a
friendly relationship and sometimes they kiss. Her
boyfriend is often at her flat, he often cleans it for her.’
(Woman, 63 years old, mild ID)
The lack of a description of support is also found in
ISP documents in which the person with ID is
described to be ‘vulnerable’in social contacts or when
he or she is in a relationship but is experiencing
difficulties in this area. Most ISP documents describe
this risk or problem, but do not provide an account of
how support is then being provided.
‘He is regarded as vulnerable and easily influenced. He
easily feels pressured by others and has the need to prove
himself. There is a risk that he is overburdened by his
environment.’(Man, 26 years old, mild ID)
‘…when they see each other and sleep together but also
when they take time to do things for themselves. He
finds it difficult to give his girlfriend space if she - for
example - wants to go out with a friend or family
member.’(Man, 36 years old, level of ID unknown)
This description of the risk or problem is also found
with respect to the wishes of individuals, with the
exception of four ISP documents, in which a support
goal was described in the area of finding a girlfriend.
Physical contact
Table 3shows that information regarding physical
contact is mostly found in ISP documents of people
with severe or profound ID. It then often relates to
how the individual responds to physical contact such
as cuddling or during physical care. The reaction to
physical contact can be interpreted as a means of
making contact with others, as this citation illustrates
‘Person likes to cuddle with staff’(woman, 47 years old,
6
Journal of Intellectual Disability Research
J. Stoffelen et al.•A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
severe ID), but it can also be an expression of
affection and sexual feelings.
‘He sometimes likes to have contact with other residents.
He can laugh at what is happening around him, but he
also seeks physical contact (with his hand) with other
residents. Residents respond in different ways, depending
on the moment and the person. Some people like it, and
keep the physical contact, other people pull their hand
back.’(Man, 21 years old, severe ID)‘He doesn’t like
it when you touch him a lot, for example when getting
dressed and shaved. He lets you know by whining and
grabbing you.’(Man, 47 years old, severe ID)
Parenting or the desire to be a parent
As is shown in Table 3,in27 ISP documents, we
found information related to ‘children’, mostly of
women with mild to moderate ID. In two cases
(1.07%), it was reported that the person with ID has
or had children. In one case, the ISP only reported
that there were two children and one child died. The
only information given about this child is that it lives
‘abroad’. In the other case, the ISP reported that the
person with ID is a mother of seven children. She sees
them every 2weeks. All her children have an ID and
live with a foster family or in an institution.
Often, it is stated in more general terms that the
person is aware of his or her disability and how this
influences his or her life.
‘He thinks about it sometimes, what if he didn’t have this
disability. How would his life be? Would he be married
and have children?’(Man, 46 years old, mild ID)
One ISP document stated explicitly that the person
with ID wants to be a parent and is frustrated that she
is not.
‘She likes her brother’s children, but at the same time
experiences the frustrations of not being able to raise
children herself.’(Woman, 36 years old, mild ID)
In one ISP document (0.53%), it was made clear
that the individual does not want to get married or have
children:
‘She has a boyfriend. They give each other kisses, but
there is no sexual relationship. If her boyfriend talks
about marriage or children, she says she does not want
that.’(Woman, 63 years old, mild ID)
Privacy
Three ISP documents (1.60%) provided information
on privacy in relation to sexuality.
‘She does not talk about sexual feelings, she finds this
private. She does however talk and giggle about
cuddling and kissing with X.’(Woman, 64 years old,
moderate ID)‘He needs guidance in order to respect the
privacy of others. It has happened that the privacy of
other group members was violated. This was caused by
his disability and/or sexual needs.’(Man, 42 years old,
severe ID)
Joining an advocacy group regarding sexual rights
No segments were found regarding the wish to meet
up or join an interest or advocacy group regarding
sexual rights. In 30 ISP documents (16.04%), all from
one service provider organisation, a standard
reference was made: “She/he can not stand for her/his
ownrights and interests”.
Provision of professional support
As is described throughout the results, little
information about the attitude of staff and the use of
sexual education, treatment or other support
strategies was found in the ISP documents. In only
eight ISP documents (4.28%) was the attitude of staff
with regards to sexuality described. Reference to the
use of interventions or programs regarding sexuality
was not found in any of the ISP documents.
‘She can ‘test’new people to see how they react. For
example, taking her shirt off in a public area. This
rarely happens now. She does say things like: “I wet my
pants”or “I don’t feel so good”(when this is not true).
Respond casually on this, change the subject or ignore it.
That is the best way to deal with it. If you stick to this
for a few weeks, this behaviour will fade away.’
(Woman, 27 years old, mild ID)‘In working with her
you need to take into account that she has had bad
experiences with men. It is therefore inappropriate for a
male to provide support in this area. In supporting her,
you should also take her vulnerability into account.
Support staff should listen to her talking about her
relationship and the feelings she has about this. Support
staff need to help her in realising her dream of living
together with someone. It is important to keep the
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Journal of Intellectual Disability Research
J. Stoffelen et al.•A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
relationship with her father and family a subject of
conversation.’(Woman, 43 years old, mild ID)
Support goals describe the areas in which and the
way in which support is provided. A total of 475 goals
were found in the 187 ISP documents. Four of these
goals (0.84%) concerned sexuality or (intimate)
relationships, refer to, for example, this goal:
‘I want to build my relationship with S. I want to
explore the possibilities of getting married or living
together. I need support to stand up for myself and make
my own choices (in my relationship).’(Man, 56 years
old, mild ID)
Conclusions
In this study, we examined ISP documents of people
with ID using residential support services in the
Netherlands. We were interested in the extent to
which sexual health and sexual rights were mentioned
in ISP documents, what subjects or issues regarding
sexuality were covered and how support is being
provided to people with ID regarding aspects related
to sexual health and sexual rights. To our knowledge,
no such study has been carried out before.
With respect to the extent to which sexual health
and sexual rights were found in ISP documents, we
found that 85% of the ISP documents provided
information in this area. This high number may be the
result from Dutch policy requiring that sexuality is
addressed in ISP documents (Herps et al.2016a).
Most often, information in the ISP documents
regarding sexuality-related topics were sexuality
(sexual or non-sexual behaviour, sexual abuse, sexual
preferences), sexual health and parenting/desire to be
a parent. This concerns a limited number of parts of
the overall concept of sexuality.
In ISP documents, there should be congruence
between the individual’s support needs and the
support agreements and goals that are set (Thompson
et al.2009). The third research question concerned
how support is being provided on sexual health and
sexual rights. The results of the present study show
that there is a large discrepancy between the amount
of information that describes aspects of sexuality of
individuals with ID and the amount of support
strategies, agreements or goals in this area. We found
little references to counselling or indications for
support provision in instances of negative sexual
experience or abuse (Abbott & Howarth 2005;
Hollomotz 2008). Furthermore, little reference was
made to the use of sex education programs or other
interventions related to sexuality and relationships
(Löfgren-Mårtenson 2012; Schaafsma et al.2013,
2015).
There are several possible explanations for the
lack of support goals or strategies regarding sexuality
being found in the ISP documents. First, it is
possible that the individual with ID or their relatives
do not want this to be written in the ISP document.
Herps et al.(2013) reported that people with ID
prefer negative life experiences not to be included in
the ISP document. However, this does not fully
explain the high number of ISP documents that did
describe aspects related to sexuality but did not
include an account of support in this area. Another
possibility is that more information can be found in
individual treatment plans or medical files, for
example, when sexual abuse has led to trauma, or
with regards to the motivation for using
contraceptives or performing sterilisation. Although
we did not find reference to such files, this does not
mean that they do not exist. Third, previous
research has shown that support staff can feel
inhibited in talking about this subject (Abbott &
Howarth 2007; Richards et al.2009) and that family
members and other support providers set different
norms for themselves (or other people without
disabilities) than for people with ID (Christian et al.
2002; Yool et al.2003; Swango-Wilson 2008). The
results of our study show that sexuality is being
talked about, but it may well be that staff feels
inhibited in making agreements about supporting
the individual in this area or that differences in
opinions and attitudes is reflected in the absence of
specific support agreements (Christian et al.2002;
Yool et al.2003; Swango-Wilson 2008; Schaafsma
et al.2013,2014,2015). A lack of support
agreements in the area of sexuality may result in
people with ID not being able to exercise their
sexual rights, to satisfy their needs or for them to
feel less able to talk about it.
It is important to note, when interpreting the results
of this study, that a lack of information regarding
sexuality in the ISP documents does not necessarily
reflect a lack of support with respect to sexuality in
daily practice. Paper plans do not necessarily reflect
the individual’s life in the fullest, and previous studies
8
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Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
indicate that developing ISP documents can be a
rather bureaucratic exercise, which is done simply
because it is required (Mansell & Beadle-Brown
2004; Osgood 2005; Herps et al.2016b).
Implications for providing professional support
The results of our study have at least three
important implications for providing professional
support to people with ID in relation to sexuality.
First, sexuality, sexual health and sexual rights are
important subjects to talk about with people with
ID. It should be part of the support needs
assessment that addresses the individual’s needs and
wishes (Thompson et al.2009; Schaafsma et al.
2017). Second, talking about sexuality, specifically
with people with ID, is not easy for many people
(Abbott & Howarth 2007; Richards et al.2009;
Schaafsma et al.2017; Stoffelen et al.2013). Not
only the individual support staff should be provided
with support to talk about sexuality and other
sensitive topics with people with ID, their relatives
and their colleagues. The whole system
(government, schools, agencies, advocacy groups,
families) should be set up to create respect and
recognition of rights for the sexuality of people with
an ID (Richards et al.2009). Third, sexuality is a
subject that needs more attention. Individuals with
ID, their relatives and staff need to be given
guidance on how to address this subject in a
respectful manner: by talking about it in a way that
takes into account the vulnerability and sensitivity of
the individuals involved, by increasing knowledge
about the topic and by increasing the support
available in this area. Furthermore, the wishes of
people with ID should determine the strategy
of support. The search for the cause and meaning of
behaviour must be leading for professional support
providers. And assuming that every human being is
a sexual being, professional support providers need
to be more sensitive about behaviour, whether or
not it is sexual. An open mind is required instead of
acting from their own standards and values.
Finally, we endorse the view of Richards et al.
(2009). They advocate a holistic approach ‘in which all
systems and supports work cohesively, simultaneously,
seamlessly, and in harmony to ensure that persons with
developmental disability achieve equality in sexual rights’
(Richards et al.2009,p.210).
Strengths and limitations of the present study
When interpreting the results, the following strengths
and limitations should be considered. A relative
strength of the present study is the number of ISP
documents we analysed and the fact that these were
sourced from different service provider organisations.
In the Netherlands, every service provider
organisation develops and implements their own ISP
procedures and forms. When the protocol of the
ISP document does not mention the topic sexuality,
the chances are that it gets forgotten or ignored. By
including different organisations in this study, we in-
corporated different kinds of forms, and, in doing so,
reduced the chance of potential biases influencing
the data.
There are also several limitations in this study. First
we used only one source in this study: ISP
documents. The results raise different questions
which could have been answered if other sources were
used, e.g. interviews with people with ID, their family
and staff. The use of other sources such as medical
documents can also provide more information. This
would be interesting for further research.
This is the first article that looked into how
sexuality is described in ISP documents. The study
was exploratory and as such did not focus on finding
differences between groups within this set of data.
However, further research could be done to explore
the results in more depth by examining differences in
gender, age and level of ID.
As described in the previous texts, future research
that involves multiple sources and analysis of
differences between groups could be done to get a
better understanding of sexuality in ISP documents.
Furthermore, international comparison is
recommended. It contributes to a better
understanding of sexuality of people with ID and their
quality of life, to compare how sexual health and
sexual rights are addressed in ISP in other countries.
And finally, it would be interesting to investigate the
whole system of government, schools, agencies,
advocacy groups, families and their vision, role and
opportunities on sexuality of people with an ID.
Recommendations
The ISP document should be a document that can be
used as a practical guide to put into practice the
wishes and preferences of individuals with ID, also in
9
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J. Stoffelen et al.•A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd
relation to sexual health. It is important to talk to
people with ID and taking their views seriously to find
out what place and value sexuality has in their lives,
what specific support they need and wish for and to
practice the concept of shared decision-making. As
such, we recommend the use of clear language and
the setting out of realistic and achievable goals,
alongside a description of the type of support needed
and how this should be achieved. Because the ISP is
person-centred, the person with ID and people
important to him or her should be involved in
decision-making. The whole ISP document should
reflect that serious consideration has been given to
sexuality –including different aspects of sexual rights,
the need for proactive sex education and how goals
related to this can be implemented.
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Accepted 14 September 2017
12
Appendix A: Search terms based on three definitions of sexual rights (Table 1)
Common subjects in the
three documents on sexual rights (Table 1)
Search terms
related to
Search
terms
The right to life Safety seks, sex
The right to equality, be free of discrimination Sexual freedom, homosexuality,
sexual diversity
seks, sex
The right to sexual health care Sexual health, treatment,
contraceptives
voorbehoed, pil, condoom,
sterilisatie, spiraal
(contraceptive, contraceptive
pill, condom, sterilisation,
contraceptive coil)
The right to information and education Sexual information,
eduction, training
voorlichting, educatie
(information, education)
The right to bodily integrity Touching, stroking,
setting boundaries
lichaam, aanraken
(body, contact)
The right to choose their partner, to
choose whether or not to marry (based on
equality and consensual)
Partner, boyfriend/girlfriend,
dating, relationship, marriage, friend
vriend, partner, man, vrouw,
verkering, relatie, trouwen
(friend, partner, man, woman,
engagement, relation, marriage)
The right to privacy Privacy priv
The right to be sexually active or not Sexually active seks, sex
The right to decide whether or not, and when,
to have children
Children kind (child)
Journal of Intellectual Disability Research
J. Stoffelen et al.•A study on the content of ISP
©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
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13
(Continued)
Common subjects in the
three documents on sexual rights (Table 1)
Search terms
related to
Search
terms
The right to pursue a satisfying, safe and
pleasurable sexual life
Sexual satisfied, safe sex
and sexual pleasure
seks, sex
The right to the freedom of thoughts, opinions
and expression
Sexual fantasies, sexual
desires, sexual expression
seks, sex
The right to enjoy the benefits of scientific
progress and its application
Sexual research seks, sex
The right to be free from torture, violence
and coercion
Sexual abuse, sexual
violence, sexual coercion
seks, sex
The right to freedom of assembly and political
participation
Advocacy group belangen (interests)
The right or access to justice, remedies en
redress
Sexual abuse, declaration seks, sex
*The terms that were used were the Dutch words and synonyms.
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©2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd