Relationships, sexuality and decision-making capacity in people with an intellectual disability

The current review attempts to summarize the current status of our knowledge and clinical practice in the complex and challenging area of relationships and sexuality for people with an intellectual disability.

Although there has been an ideological shift within services for people with an intellectual disability towards person-centredness and inclusivity, this change has not manifested in an obvious way at the practice level in the area of relationships and sexual expression. Recent surveys of caregivers and service providers do show a greater awareness of the fact that sexuality is a central part of personal identity, yet generally restrictive or prohibitive attitudes prevail at both individual and organizational levels. These attitudes appear to reflect a fear of possible legal sanction as well as ethical and moral conflicts. The views and experiences of people with an intellectual disability generally confirm this impression that, whereas some small changes have taken place, the prevailing experience is of restriction. Whereas there is now an abundance of sexuality and relationship educational programmes available, they require more rigorous and systematic evaluation both in terms of their effectiveness for enhancing knowledge and, more importantly, for examining the impact of that education on behaviour and capacity to make sexuality-related decisions, which we know to be a fluid ability.

There is a need for greater education of caregivers and a need for discussion of the complex issues regarding relationships and sexuality at a societal and policy level. The development of self-advocacy in disability services provides a vehicle to operationalize the changing service ideologies in a way that provides greater opportunities for enriching relationship experiences whilst also preventing undue risk of harm. However, successful self-advocacy requires organizational support, and this remains the greatest challenge for service providers.