Quantitative assessment of sexual knowledge and consent capacity in people with mild to moderate intellectual disability

Abstract

While it is well known that people with an intellectual disability experience the same needs for intimacy as those without an intellectual disability, a number of developmental, structural, environmental, and attitudinal barriers circumvent the expression of sexuality in people with an intellectual disability – particularly in institutional and residential health care settings. People with an intellectual disability generally have lower levels of sexual knowledge than those without an intellectual disability, and sexual exploration and expression is frequently viewed with concern by mental health care practitioners and caregivers, who may regard people with an intellectual disability as being ‘nonsexual’ or ‘hypersexual’. However, the rights of people with an intellectual disability to sexual expression have been established in policy and legislation. Service providers are required at times to make determinations regarding the ability of people with an intellectual disability to consent to sexual intercourse in a number of health care settings. There is a dearth of published literature on psychometric instruments to assess sexual knowledge and consent capacity. This article briefly reviews the more commonly used sexual knowledge and consent assessments for people with mild to moderate intellectual disability and advances recommendations in this regard.

Approaches to Determine and Manage Sexual Consent Abilities for People With Cognitive Disabilities: Systematic Review

“…Withhold Bias—people’s attitudes, including those of staff members and caregivers, may inadvertently be against a client’s sexual preferences and deny them their rights to sexual expression [ 91 ]. It was strongly recommended for both clients and staff to receive education programs to discern differences between normative and unhealthy sexual behaviors in addition to reframing their perceptions regarding client sexual preferences and rights [ 3 , 23 , 29 , 34 , 88 , 92 ].…”

“…Friends and family of the evaluated person are encouraged to play a role in the discussion process [ 22 ]. Team input determines the restrictions of sexual expression, if any and medications to be prescribed, if any, while also noting contextual factors of the relationship, such as potential risks of coercion or abuse [ 22 , 92 ]. Overall, the integrated approach focuses on holistic contextual factors throughout the assessment process, including factors such as the person’s communication ability, access to privacy, informed consent ability, family involvement, religious beliefs, and social history [ 22 , 88 ].…”

“…For educational programs themselves, the recommendations were the Living Your Life—The Sex Education and Personal Development Resource for Special Education Needs [ 86 , 108 ] and comprehensible evidence-based programs with simple language [ 3 ]. It is important for the aforementioned assessments to be used only for the identification of gaps in a person’s knowledge of safe sexual acts, followed by providing educational programs to rectify such gaps if necessary [ 48 , 92 ].…”

“…A report by Victor [ 23 ] mentioned the use of staff attitudes about intimacy and dementia survey proposed by Kuhn [ 114 ] to measure staff or caregiver attitudes on this topic. A collaborative reform process was recommended to change legal terms (eg, mentally impaired to vulnerable or protected persons) when reframing government views that hold people to a disproportionately higher standard [ 92 ]. For committee approaches, members were tasked with reducing the risk of personal bias within the leading assessor, by providing a balanced exchange of ideas in a competent and thorough manner , throughout the consent capacity determination process [ 5 ].…”

Estimating sexual knowledge of people with mild intellectual disability through a valid and reliable assessment scale: The ISK‐ID

“…Despite the relevance of assessing the level of sexual knowledge of people with intellectual disability, there is a lack of sound, standardized psychometric instruments to quantify this knowledge (Kramers-Olen, 2017). This gap is partially explained by the complexity of assessing a topic that comprises multiple areas (e.g., friendship, dating and intimacy, body part identification, menstruation, sexual interactions, contraception, pregnancy, abortion and childbirth, STDs, masturbation, homosexuality, etc.).…”