By Carli Friedman, CQL Director of Research
Although people with intellectual and developmental disabilities (IDD) are interested in and capable of sexual and romantic relationships and often want to be parents, many people with IDD do not receive comprehensive sex education or supports for sex, relationships, or parenthood. Yet, individualized supports greatly increase the likelihood of people with IDD having intimate relationships and being satisfied with those relationships. For these reasons, the aim of this study was to examine how sexual health and parenting supports were provided to people with IDD in Home- and Community-Based Services (HCBS). To do so, we analyzed 107 HCBS waivers for people with IDD from across the United States from fiscal year 2021.
Sexual health services often included behavior supports for inappropriate behavior and/or education about sexuality, sexual health, and relationships. Parenting services regularly involved supporting people with IDD to develop parenting skills, and education about child welfare and other related skills. Seven states and the District of Columbia provided sexuality and/or parenting services in 2021 (see figure below).
States Providing Sexual Health and/or Parenting Supports
Sex-negative approaches to people with IDD’s sexuality are reactive and focus on danger, violence, victimization, and controlling people’s sexuality. Sex-negative approaches often result in assumptions that people with IDD are not interested in or capable of sex, relationships, or parenting, along with people not receiving sex education, and parenting rights being removed. In contrast, sex-positive approaches to people with IDD’s sexuality are proactive, recognizing people with IDD as sexual beings who are interested in and capable of sexual relationships and parenting, promoting inclusivity, and providing comprehensive sex education. The majority of sexual health services (87.5%) took a sex-negative approach, while only 12.5% of sexual health services took a sex-positive approach. Meanwhile, 100% of the parenting support services took a sex-positive approach.
Approaches to Sexual Health and Parenting Supports
While we are encouraged by those states and waivers providing sexual health and parenting supports, only a fraction of people with IDD were projected to receive these services in 2021. In addition, it is important to remember that “honoring people with IDD’s sexual and reproductive rights, requires both taking a more wholistic, comprehensive, sex-positive view of the sexuality of people with IDD, and also eradicating deficit-based understandings of IDD that portray them as incompetent, child-like, and low ability, resulting in paternalism, rights restrictions, and oppression” (Friedman, 2022, p. 14).