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Transition planning for socialsexual health: the voices of
individuals with intellectual
disabilities
George Turner, PhD, LSCSW/LCSW
Turner Professional Group
[email protected]
816.931.8255
Mimi Staulters, Ph. D.
Widener University
[email protected]
CEC-TED Grand Rapids, MI
November 7, 2012
Review of the Literature

the social-sexual voices of individuals with disability have
been silenced and disability has somehow implied asexuality
(Thompson, Bryson, & DeCastell, 2001).

There is a need to challenge these assumptions so people
with disabilities “can more fully participate in contemporary
society” (Ponthier, 2006, p. 2).

Sex education for individuals with ID has focused on the
very practical implications of sex including body parts,
sexual abuse, and avoiding sexually transmitted disease and
pregnancy (Leutar & Mihokovic, 2007),

The sexual education of individuals with ID is often not
uniform, and the quality has been somewhat dependent
upon the awareness, attitudes, and values of staff and
caregivers who administer it (McConkey & Ryan, 2001).
Transition planning for social-sexual health: the voices of individuals with intellectual disabilities
Barriers to Sex Education

Restricted opportunities (Lesseliers et. al., 2009)

Limited meeting places to develop
relationships,

Lack of self-determination due to
dependency, and care-giver attitudes (LofgrenMartenson, 2004).
Perceptions,Values, and Comfort of
Educators

Important opportunities for promoting more
comprehensive perspectives on basic intimacy,
sexual advocacy, and obtaining necessary sex
related information may be missed when
educators are uncertain or uncomfortable
with how to teach the relative material.

We all need to examine our own personal
values and biases before determining what and
how to teach social-sexual health related
behaviors.
THE PURPOSE OF THIS RESEARCH WAS
TO CREATE OPPORTUNITIES FOR
INDIVIDUALS WITH ID TO MAKE A
CONTRIBUTION TO THE PROFESSIONAL
DISCOURSE ABOUT THE SEXUALITY OF
PEOPLE WITH DISABILITIES
The Study
Purpose

The purpose of this case study was to
explore and document how adults with
ID live out their social-sexual lives, by
using interviews and observations to
create case studies that elucidate the
social-sexual lives of adults with ID.
Hopeful Outgrowth
Create opportunities for individuals with ID
to make a contribution to the professional
discourse about the sexuality of people with
disabilities
 Help individuals with ID to find their socialsexual voice
 Develop their identity as sexual persons,
increasing their self-efficacy, and broadening
their social community.
 Improve services provided to adults with ID
and, more importantly, impact the quality of
their lives.

Methods

This qualitative case study
◦ informed by heuristic inquiry and
◦ guided by an emancipatory research paradigm,
(Creswell, 2007).
was an investigation of self-reported views,
values, and desires of adults with mild
intellectual disabilities regarding relationships,
romance, and sexuality.
Participants
Milton
Lionel
The study described and
interpreted the lived sexual
experience of five adults
with ID by exploring the
meaning they attached to
their sexual lives (Denzin & Lincoln,
1994) and by examining their
social-sexual voice through
the use of discourse analysis.
Terri
Kristy
Richard
Participants Demographics
Case Study Demographics
Participant
Age
Residence
Race/Ethnic
Group
Relationship
Status
Employed
Milton
54
Agency
Apartment
Caucasian
Single
Sheltered
Workshop
Terri
31
Group
Home
Caucasian
Boyfriend
Sheltered
Workshop
Richard
48
Owns
Home
Caucasian
Girlfriend
Semi
Community
Lionel
21
Agency
Apartment
African
American
Dating- Not
Monogamous
Semi
Community
Kristy
48
Agency
Apartment
Caucasian
Married
Unemployed
Community
Participants Inclusion Criteria
Consent:
Diagnosis:
Guardianship:
Language
Comprehension:
System
Support:
Spoken
Age:
Language:
Participants Inclusion Criteria

Guardianship: Participants must be their own legal guardian.

Diagnosis: The participants must have a diagnosis of “mild” mental retardation or intellectual

Language Comprehension: Each participant must have verbalization skills sufficient to express

Spoken Language: Participants must be able to speak and understand English.

Age: Participants must be 21 years or older and less than 70 years.

System Support: Participants must be receiving case management support

Consent: Participants must give consent. Informed consent includes understanding: relevant facts,
disability, made by a mental health professional. A formal diagnosis based on the American Psychiatric
Association’s Diagnostic and Statistical Manual of Mental Disorders was confirmed in their case records
by a professional contact who agreed to screen potential participants according to the criteria. Ideally,
the sample for this study would include people who are coupled and single.
him or herself, since the expense and logistics of securing interpreters, language assistive devices and
other related resources are beyond the scope of this study.
having the ability to consider risks and benefits, and being able to make a voluntary decision (Grisso,
1986). As stated above the participants will be their own guardian and entitled to the rights of giving
consent. To confirm consent I read a consent form (Appendix C: Participant Consent Form) and then
asked six questions to ascertain understanding.
The Interview: Details

Three interview meetings occurred
◦ 1st meeting:
◦ 2nd & 3rd meetings:
participant’s home
my office.

Approximately 1.5 hours scheduled for each
meeting

Intended to occur one to two weeks apart

My research assistant, Lisa, and I spent
approximately three hours with each participant.
The Interview



Thompson (1994) promotes the use of firsthand accounts by adults with ID to
understand how they experience their
sexuality and relationships.
A casual, conversational style was utilized,
allowing participants to lead their
storytelling to elicit the essence of their
social-sexual voice.
An Interview Guide (see Appendix A) was
used to explore six areas of focus, using the
scripted prompt, “So tell me about
___________,” and follow up probing.
The Interview: 6 Focus Areas
(1) attraction,
 (2) dating, boy/girlfriend,
 (3) romantic love,
 (4) sex,
 (5) sex education,
 (6) seeking help.

*Some questions were not asked if participants did not meet
the criteria, such as marriage.
Timmers, DuCharme, and Jacob (1981)
The Interview: Question Design

Easy to understand questions
◦ simplicity was paramount
◦ provided alternative wording when it seemed that certain words were
not being understood.

Pleasing/ Apparent Hesitancy
◦ “I don’t know” picture-placard
◦ “I don’t want to answer” picture-placard
Questions acted as a guide, but not a
mandatory list to complete
 Additional Prompts

(Siebelink et al., 2006).
◦ To facilitate a more free flowing discussion.
Booth and Booth (1994)
(e) Needs Segregated
(f) Partner Sexual
Self-advocacy
(b) Other
(c) Expectations
(d) Marriage Bias
(e) Tips
(f) Wants
(g) Requests
(a) Expressiveness
(b) Content Defining
(b) Tension Release
(c) Skin Hunger
(d) Anatomy and
Physiology
(e) Attraction
Template
(a) Absence of
Loneliness
(b) Flirting
(c) Choosing to be
Known
11. Reproduction
(a) Body Image
10. Intimacy
(h) Rehearsal
(i) Benefits
(c) Feedback Partner
(d) Community
Integration
(d) Disability Social
Culture
4. Sexual Experience
(c) Seeking
Permission
(d) Needs Silenced
(a) Erotic
(b) Age-appropriate
8. Sexual/Relational Support
(c) Knowledge
Accurate
(a) Own
(b) Needs Presented
3. Sexual Self-Identity
(a) Sources
(b) Knowledge Rich
determination
7. Sexual Vocabulary
(d) Pride
(e) Fear
2.Sexual Self-advocacy
(c) Avoidance
(a) Self-
6.Sexual Script
1. Sexual Attitude
5. Sex Education
Major Themes
of the Cross
Case Analysis
9. Sensuality
Results:
(a) Shame
(b) Anxiety
(a) Family
(b) Community
(c) Staff
(d) Agency
(e) Access Info
(f) Access
Transportation
(g) Access Systemic
(h) Access
Technology
Conclusions:
Participant
Sex Ed School
Sources of Sexual Information
Porn
Parents
Mainstream Media
M:
No
Yes
No
DA
T:
No/Yes
DA
No
DA
R:
Yes
Yes
No
DA
L:
Yes
Yes
Yes +
DA
K:
Yes
Yes
Yes
Yes
Participants Voice: Richard
Richard detailed his experience of sexual experimentation
when he was 13 with a girl who was 14 by playing doctor and
perhaps engaging in peeping, stating,

And, um, I can't remember. Uh, some school I went to, uh. [silence]
I had a girlfriend in--in England in--in school. So. I remem---I
remember I pull her pants down. Uh, I remember I got in trouble.
Uh, by the other people [teachers]. Um, I went in the girls
restroom and--and I got in trouble by [school official].
Intercourse was described by Richard using the word, “hole”
instead of vagina or a more common street/slang word such as
“pussy.” He stated that he learned how to have sex from
movies. He said they had no prior conversation but rather, “just
did it” one time and that they used a condom.
Participants Voice: Lionel
Lionel also describes having intercourse, doing
the “same thing that they do in the porno”:

Uh, [laughter] uh, well, I done it with one girl, but
not--not that. That was one girl that I went out
with her. So yeah, but I had to--it was my first
time. I did the same thing that they--th--th--that
they--that they do in the porno movies. Like put
their penis inside a vagina, and uh, put it in the
mouth and, uh, put it in their butt.
Participants Voice: Kristy
School. Kristy described her school
experience as happening in a “home ec
class,” stating that,
 “we probably had a little bit of it in the--in
science too. Because they wanted to kind of
ease you in there at first.” She shared that
the class explored, “our body parts, uh, how
women get pregnant, and conser--I can't say
it – concer---” “Contraceptives?” I asked and
she nodded saying, “Thank you.”
Participants Voice: Erotica
Erotica/porn. From magazines, to videos, to the
computer, pornography was cited by four of the
participants as sources of sexual information.
Richard shared that he looked at Playboy and when I
prompted him regarding his experiences in
watching pornographic videos, he provided scene
descriptions rather than titles, stating,
 “Um, um, having sex in a carwash.” When I probed
for additional ways that he learned about sex, he
again described a video scene, sharing, “Um, um,
uh, I'm sex in the, um, in the bathtub.” Lionel shared,
“Yeah, yeah. I watch--I watch--I listen--I watch, um,
porno on--I watch porno on my computer.”
Sexual Voice:
Mainstream media. Additionally,
mainstream media played a role for
participants’ sexual knowledge. Kristy
shared,
 I just watched stuff, you know, TV programs. I
watched Dr. Ruth.Yeah. I liked her. Dr. Phil,
you know. And that's where I learned a lot of
my maturity.
Sexual Voice: Knowledge Rich
Knowledge rich. A variety of sexual information was provided to participants,
indicating a significant lack of basic information on sexual health. Participants
experienced knowledge poverty in regards to sexuality as demonstrated by
Richard who though he exclaimed that Cathy “don’t like having babies”, could
not identify any methods to prevent them. Asked, “Has anyone ever talked to
you about how to prevent having babies or described ways to have sex if you
don’t want babies?” Richard responded:










R:
No. I haven't.
I:
Has anyone ever talked to you about condoms?
R:
Yeah. Uh, yes. I heard about condoms.
I:
Have you ever seen one?
R:
Yes. I have.
I:
You have. Okay. Have you heard that sometimes women take these
little pills called birth control?
R:
Right.
I:
Have you heard about those?
R:
Yes. I have.Yes.
I:
Yeah?.
Sexual Voice: SO, Rape, Birth,etc

Only one participant could identify sexual
orientation; however, one additional
participant did exclaim, “Oh. Lesbians”
when I said, “and then there's also people
who like both boys and girls. That's called
bisexuals.” Two of the participants could
not recognize rape, and I defined making
out and the birth process for one of the
participants.
Sexual Voice: Knowledge Accurate
Participants frequently experienced inaccurate sexual knowledge. Richard expressed misinformation about the birth process:
























I:
Where does the baby come from?
R: Um, from the tummy.
I:
Do you know how the baby gets outside?
R: Uh, from your back.
I:
From the back?
R: Yeah.
I:
Where at?
R: On your backside.
I:
From the anus?
R: Yeah.
I:
Oh. Actually, it comes from the front side of a woman.
R: Front--oh, front side.
I: Uh huh. From a woman.
R: Okay, okay.
I: Mm-hmm. You know where you have a penis -R: Right.
I: --a woman has a vulva -R: Oh. Okay.
I: --and it comes out of that.
R: Oh. Okay.
I: Did you know that?
R: Mm-hmm.
I: Oh. Okay. Yeah.
R: Yep. That's where it comes from.
Sexual Voice: “Others” script

Because she--she has to ask me first if you
want to or --if I do I say yes. If she says--she
says she don't want to do it, if she--I will just
say, okay. We won't--we won't do it. So if
someone says, no, it means no. Don't force
anybody on--on them. Right. Because if
somebody forced me or--or--or --somebody on--on me I have to say, no, --if I
don't like it I won't do it. I'm not going to
force anybody--force them. And I won't force
them, because it's not right to force nobody
if they don't want to do it.
Sexual Voice: Kathy’s Gem
When I asked what knowledge that she would bestow upon a group of
college students regarding adults with ID and sex, she doled out her gems of
experience in the following:
 K : And I think people need to learn that we have a mental disability, but
we need to know the stuff also --about sex. Even--even--even if it starts
basic and then gets harder, it just depends on the grade [inaudible], your
age, and the maturity level you're at.
 I: So--so it sounds like you're saying that people with a mental disability
still need to know about the sex, but it just might take them a little bit
longer?
 K: Bit longer. Yeah.
 I: Okay. Any other--do you think there's any other challenges?
 K: Uh, not really. I think, like I said, it's depends on your, um, maturity and if
you're ready to listen to this. Some people aren't. And I think at middle
school level ---- it's good--to begin. And then start--little by little. We might
not be as bright as your students right now, but we have the same feelings
and the same, uh, [silence] same sexual activity as other people. And it
might take us longer to get there, but we understand and it just--we're just
a little slower at times.
Conclusions:
Findings from this study strongly suggest
that participants experience their sexuality
beyond a narrow focus on safety as detailed
in abuse or pregnancy prevention programs
but rather in a manner consistent with Way
(1982) who described sexuality as a social
phenomenon.
Conclusions:

Despite an almost exclusive focus of
disability services on sexual education
geared toward reproductive health and
biology, both my literature review and this
study demonstrate a severe deficit in
meeting these practical objectives. Simply
put, adults with ID lack basic biological
facts; adults with ID are receiving inferior
sexuality programming (Fiduccia, 2000).
Limitations













Small samples and convenience sampling
Only heterosexuals/Diversity in sexual orientation
Only diagnosis of mild mental retardation,
Only participants who were their own guardian.
Only selected participants who were verbal and who could
speak English.
Mid-western, suburban setting with
Only one person of color
Self-reported data
Power differential
Staff selection bias limits this study
Only adults
Acquiescence and response bias
Not co-produced with participants
Utilizing Transition Plans
Federal education laws mandate comprehensive transition plans for
the purpose of improving academic and functional performance
necessary for movement from school to post-school experiences.
Plans must account for, the individual’s strengths, preferences, and
interests and include instruction and experiences that support the
development of post-school adult living objectives (IDEIA, 2004, [34 CFR
300.43 (a)] [20 U.S.C. 1401(34)]).
Transition plans provide the best opportunity to ensure that
individuals with ID have access to information and social
experiences that foster the development of healthy sexual
relationships.
Goals which encourage developmentally appropriate social skills,
teach accessibility to information on sexual practice and health
related information, and support sexual self-determination skills
are the basic structures to assist healthy sexual behavior in
adulthood.
Utilizing Transition Plans
Federal education laws mandate comprehensive transition plans for
the purpose of improving academic and functional performance
necessary for movement from school to post-school experiences.
Plans must account for, the individual’s strengths, preferences, and
interests and include instruction and experiences that support the
development of post-school adult living objectives (IDEIA, 2004, [34 CFR
300.43 (a)] [20 U.S.C. 1401(34)]).
Transition plans provide the best opportunity to ensure that
individuals with ID have access to information and social
experiences that foster the development of healthy sexual
relationships.
Goals which encourage developmentally appropriate social skills,
teach accessibility to information on sexual practice and health
related information, and support sexual self-determination skills
are the basic structures to assist healthy sexual behavior in
adulthood.
Transition Planning with Individuals
and Families
All individuals with disabilities have a right to education about
sexuality, sexual and reproductive health care, and
opportunities for socializing and sexual expression (SIECUS,
2011).
Parents want to acquire skills to help teach their children
information about sexuality and to appropriately apply this
knowledge to their everyday environments (Ballan, 2012).
Parents want information pertaining to the normative sexual
development of their children, but believe professionals lack
initiative or receptivity to addressing children’s sexual
maturation unless an aspect of sexuality presents as a
behavioral problem (Ballan, 2012).
Families perceive educators as
experts, but……
Training in sexuality is viewed as a primary need
for professionals serving parents of children with
disabilities.
‘‘The experts have an answer for every situation
with my child except the one that could land him
in jail if he handles it wrong. I just wish they
would be trained to ask us the important
questions since we don’t know what questions to
ask or to who? (Ballan, 2012, p. 800)
Planning with the Individual and Family

Person Centered Interviews with social sexual health
questions.
◦ What current sexual behaviors and knowledge of sexual
behaviors (i.e., relationships, expressed interests or
questions, access to pornography, masturbation) exists?
◦ How does the individual currently gain information about
relationships, intimacy, and sex?

Ecological Inventory of current and future
environments.
◦ What resources and supports will be available to provide
social-sexual health information to the individual?
◦ What opportunities for developing intimate relationships
will be available?
Transition Goals and Objectives

Independent living goals pertaining to
personal safety, protection from abuse, selfadvocacy, and/or self-awareness.
◦ Self-determination
 Advocating for rights to build and maintain
relationships
 Expressing interests and preferences
 Identifying quality resources for social-sexual health
information
 Others?
Agencies Providing Resources
Advocates for Youth
 ETR Associates
 Family Acceptance Project
 Family Equality Council
 Families Matter USA
 Florida Developmental Disabilities Council,
Inc.
 Gender Spectrum National
Conference for Families with Gender
Variant and Transgender Children and
Teens

Additional Resources

Diverse City Press

The Ultimate Guide to Sex and Disability,
Miriam Kaufman, Cory Silverberg, Fran
Odette

Teaching Children with Down Syndrome
about Their Bodies, Boundaries, and
Sexuality: A Guide for Parents and
Professionals, Terri Couwenhoven, MS
References
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Booth, T., & Booth, W. (1994). Parenting under pressure: Mothers and fathers with learning difficulties. Buckingham, UK: Open University
Press.
Creswell, J. W.. (2007). Qualitative inquiry and research design. Thousand Oaks, CA: Sage
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Individuals with Disabilities Education Improvement Act (2004). Pub. L. No. 108-446.
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