Instituting Sexual Ableism: The Use of Capacity to Consent Assessments with People Labeled with Intellectual Disability

Background and Purpose: Sexual and partnered relationships are a cornerstone of well-being for many people (e.g., fostering physical and mental health, life satisfaction and fulfillment). However, the sexual rights of people labeled with intellectual disability (ID) are frequently abridged via “capacity to consent” (CTC) assessments. Such assessments evaluate sexual health knowledge and purported rationality to determine whether a person is able to consent to sexual activity. If a person fails an assessment, their opportunities to engage in sexual relationships are denied. Designed to prevent sexual violence, state policies often require assessments without offering practical guidance for providers.

While the sexuality and relationships of people labeled with ID constitute a growing area of research, CTC assessments remain a largely unaddressed - yet tremendously impactful - area of policy and practice. This qualitative study explores the perspectives of disability professionals and guardians regarding CTC assessments.

Methods: Using purposive sampling, I conducted semi-structured interviews with 12 disability professionals and guardians in a mid-sized city in the northeastern U.S. The disability professionals served in administrative roles (e.g., residential, sexual health, and self-advocacy services), but each also had direct contact with adults labeled with ID. Using a semi-structured interview protocol focused on barriers to sexual health and rights, I elicited their perspectives regarding how disability services affect the sexual wellbeing of those labeled with ID. I followed Charmaz’s (2014) Grounded Theory analysis strategy using line-by-line and focused coding, memoing, and constant comparison to iteratively analyze the transcripts and construct categories.

Findings: Almost all participants (92%) identified CTC assessments as the standard of practice, yet all who did also raised concerns when discussing the practice. Their concerns were captured by two categories. The first involved critiques that CTC assessments fail in their practical utility to validly assess capability to consent and to meet their intended aims. Over 80% of participants addressed such issues, including that services do not provide sufficient sexual education to pass assessments, communication in the testing process is often inaccessible, professional subjectivity and bias produce inconsistent outcomes, and they fail to prevent sexual violence even among those whose rights are revoked. The second category captured concerns about their ethical implications. Approximately a third discussed CTC assessments as an ethical violation, including viewing the practice as discriminatory given that adults in the general population are not assessed, asserting that the assessments further punish victims by restricting their rights, and expressing condemnation that they bar fulfillment of a vital human need for intimacy.

Conclusions and Implications: To support the well-being, health, and self-determination of people labeled with ID, assessments may serve a valuable role, but only if their outcomes are used to expand support offered to people, rather than revoke it. Social workers - including researchers, policymakers, and practitioners - are well-positioned to attend to efficacy and ethics in developing and implementing new assessment tools. Drawing on social work values as well as participants’ concerns and suggestions, I offer recommendations for an alternative assessment tool that enables, rather than restricts, people’s socio-sexual rights.