1. A Study of Sexual Preference/Sexual Identity for Individuals with an Intellectual Disability: A Preliminary Study
David Duran, Ph.D. & Jody gardner, M.s.
Integral care – travis county local authority

2. Learning Outcomes
Identify Major Factors influencing our current knowledge regarding sexuality and intellectual disabilities
Ethical Considerations in discussing sexual preference/identity and sexual behavior with staff, family and individuals
What do the experts say?
Families
Direct Support Professionals
Indirect Professionals

3. Sexual Preference Quiz
Turn to your partner and tell them your Sexual Preferences…

4. Current Research and Scales to Measure Sexual Preference/Identify for Individuals with an Intellectual Disability
Epstein Sexual Orientation Inventory – 18 Questions, simple yes or no answers – No norming with individuals with an Intellectual Disability
National Health Interview Survey Only 4 questions
Do you think of yourself as: [For men: ] Gay [For women:] Lesbian or gay [For men: ] Straight, that is, not gay [For women:] Straight, that is, not lesbian or gay Bisexual Something Else (Go to A) Don’t Know (Go to B)
A. [If ‘something else’ is selected] By something else, do you mean that…
You are not straight, but identify with another label such as queer, trisexual, omnisexual or pan- sexual You are transgender, transsexual or gender variant You have not figured out your sexuality or are in the process of figuring it out You do not think of yourself as having sexuality You do not use labels to identify yourself You made a mistake and did not mean to pick this answer You mean something else (Go to C)
B. [If ‘don’t know’ is selected] You did not enter an answer for the question. That is because you: You don’t understand the words You understand the words, but you have not figured out your sexuality or are in the process of figuring it out You mean something else
C. [If ‘you mean something else’ is selected] What do you mean by something else? Please type in your answer

5. Survey Development
Found no existing Scale to measure or classify sexual preference or identity that has been normed for individuals with an Intellectual Disability
Epstein Scale – Requires a level of understanding outside of the capacity of most individuals with an intellectual Disability

6. Start from the Beginning
“If you don’t know where you are going, any road will get you there” Alice in Wonderland.
How can you look for the answers when you don’t even know the questions? Renato Rosaldo
Qualitative Research Design – What are the opinions, beliefs and attitudes of those impacted by the questions

7. Is Sexual Preference Fluid or Static?
What is our certainty regarding the impact of culture and expectations upon preference?
What is the impact of parental/care giver opinion and beliefs on sexual identity and behavior?
What is the impact of supervision on sexual behavior?
How does a person develop a sense of identity?

8. Research Development
Use a scale or measure that currently exist, without modifications
Modify an existing test or scale and impact the validity and reliability of the test
Work with test developers and ask if modifications would maintain the test validity
Create one without any psychometric power

9. A Qualitative Study of Sexual Preferences/Identity for Individuals with an Intellectual Disability
Began with an awareness that discussions of sexual behavior for many individuals with an intellectual disability occur when the behavior has been viewed as problematic
Discussions of sexual preference and identity are often far more uncomfortable for others than for the individual
Sensitivity to the topic does not mean avoidance of the subject
Humans are social beings, including having basic wants, wishes and desires

10. Qualitative Study Development
Where do people learn about sex?
How comfortable are you speaking to folks you know about the topic?
Do you know the sexual preference of the people you work with?
How do you define a relationship?
How do you categorize sexual identity?
Who gets to define sexual preference?
How much freedom should be afforded?
What does it mean to consent?

11. What types of sex education programs are you aware for individuals with an intellectual disability? If you aren’t aware of any, where might you find out? Or direct staff and family, is there a plan for them to receive some? 
The major find- a lack of awareness of any sex education programs in the local authority.
Second finding- awareness of one single program, however the primary program identified was a single contact program.
Third finding- multiple programs included the single contact model.
Fourth finding- schools were identified as a resource for sex education course.
1/3 of respondents indicated no relationships

12. Are you aware of any of individual(s) you support being in a relationship? If yes, explain what that looks like for your individual. If not, have they been before and if so, what did it look like?
Major Finding- The vast majority of respondents were aware of the individuals being in relationships.
Second Finding- The type o relationships varied from platonic to married couples.
Third finding- defining a relationship was a challenge for study respondents
Fourth finding- a significant number of respondents indicated that no relationships existed for the persons they supported.

13. Who is the individual(s) you support physically attracted to
Who is the individual(s) you support physically attracted to? If you haven't talked to the individual you support about their attractions would you consider talking to them about this subject? 
Major Finding- The vast majority of respondents indicated mostly heterosexual attraction
Second finding- an indication of both heterosexual and homosexual attraction
Third finding- a hesitation or discomfort discussing the topic of sexual attraction and preference
Fourth finding- issues of professional boundaries and appropriateness of topic

14. What is the individual(s) you support sexual preference, or how do they identify?
Major Finding- primary response was mostly heterosexual
Second finding- Both heterosexual and homosexual
Third finding- heterosexual preference only.
Fourth finding- a lack of awareness of any sexual preference for the individual supported.

15. How much freedom should someone with an intellectual disability have to express their desires and wishes?
Major Study Finding- Vast majority of respondents indicated that this population had the same freedoms as anyone else.
Second finding- a small percentage of respondents gave conditional support for freedoms.
Third finding- Many of the respondents placed conditions and caveats to those freedoms.

16. Does the individual you support participate in what would be considered sexual activity? Do you discuss this with them? 
Major finding- yes individuals were sexually active
Second finding- Sexual activity was based on client self reports
Third finding- definition of sexual activity varied based upon respondents definition of sex.
Is masturbation considered sex?

17. Do you believe an individual with an ID/DD diagnosis is able to consent to sexual behavior?
Major Study finding- Consent was dependent upon intellectual disability and capacity to consent.
Second finding- A very small percentage agreed without conditions.
Third finding- Consent has a legal or developmental concept

18. Consent Is consent a legal issue?
Can an individual consent without the use of words?
Can a family member or LAR dictate the choice of sexual behavior?
Can an individual with an intellectual disability consent to sex with another individual with an intellectual disability?
Can masturbation be regulated?
i.e. LAR took away sex toys

19. What we learned from Families
There is far more comfort in discussing sexual preference, identity, and behavior than previously assumed.
Relationships are an important component of their children's lives, there was a desire for them to have positive, healthy, and fulfilling relationships.
Parents had a realistic view of their children's expectations and involvement in relationships.
Parents viewed consent specific to their children's capacity to make informed choices.
Caveat- based upon austin

20. What we learned from Direct Support Professionals
The most contact and opportunities to discuss sexual preference, identity, and behavior.
Most informed regarding programs to address sexual preference and identity for individuals with an intellectual disability.
A high level of comfort discussing sexual behavior
Tended to have more nuanced versions of consent based upon knowledge of the individuals
DSP often talked about severe and profound impacting the capacity to consent.

21. What we learned from Indirect Support Professionals
Often indicated a discomfort in discussing sexual preference, identity, and behavior.
Lack of awareness of existing resources in the community
Viewed issues of behavior and consent from more of a systemic point of view and less individualized
Further removed from direct contact with clients tended to impact attitudes and beliefs surrounding sexual behavior.
Consent was viewed from a position of conditions related to the disability of the individual

22. Overarching Themes
The issue of sexual preference and sexual behavior is only discussed when it has become problematic
The topic is only discussed when disclosed by client
Issues of professional boundaries
Individualized responses based upon single client experiences
Discomfort with labels and titles associated with sexual preference and identity
Identifying what is considered sexual behavior

23. Application of Research Findings
Supervision Considerations:
How relationships and sexual behavior become a comfortable area for direct staff interactions with clients
Develop resource guide for developmentally appropriate sex education services.
Staff training on sexual preference and identity for individuals with intellectual disabilities.
Nursing considerations:
Sexual preference/activity as a health concern
Birth control and safe sex practices
Sexual behavior and informed consent
Cultural competency is a general term, new terms do not need to be identified based on individuals with ID
Positive sexual health assessment, i.e. discussing the positive aspects of sex. Not just discussing it when it has become a problem.

24. Next Research Steps
Expand the number and location of sample (you can help with this!).
Coordinating with existing research on sexual preference and identity through the prism of an intellectual disability.
Development of a basic sexual behavior questionnaire utilized by DSP’s, nurses, and family members.
Transfer responses to developing a developmentally appropriate scale specific to preference and identity for individuals with an intellectual disability.

25. Systemic Next Steps
Acknowledging the information that a service gap in sex education for individuals exists.
Advocating for a more appropriate sex education programs for individuals with an intellectual disability.
Expanding yearly reviews to include relationships and sexual health.
Development of trainings for direct and indirect staff regarding healthy relationships.