Elizabeth K. Schmidt, PhD, OTR/L, is Postdoctoral Fellow, Families and Autism Research Laboratory, College of Health and Rehabilitation Sciences, Sargent College, Boston University, Boston, MA
Brittany N. Hand, PhD, OTR/L, is Assistant Professor, Department of Health and Rehabilitation Sciences, The Ohio State University, Columbus
Susan Havercamp, PhD, is Associate Professor, Nisonger Center, College of Medicine, The Ohio State University, Columbus
Carolyn Sommerich, PhD, is Associate Professor, Department of Integrated Systems Engineering, The Ohio State University, Columbus
Lindy Weaver, PhD, OTR/L, is Assistant Professor, Injury Prevention and Rehabilitation Research Laboratory, Department of Occupational Therapy, The Ohio State University, Columbus
Amy Darragh, PhD, OTR/L, FAOTA, is Division Director and Associate Professor, Injury Prevention and Rehabilitation Research Laboratory, Department of Occupational Therapy, The Ohio State University, Columbus
Importance: People with intellectual and developmental disabilities (IDD) express a clear interest in intimate relationships but face many barriers to receiving sex education (SE) that would support their engagement in these relationships.
CE Credit: .1 CEU (1 credit hour/1.25 PDU)
Objective: To understand barriers to, the context of, and recommendations for SE for people with IDD.
Objectives:
1. Discuss barriers to sex education for individuals with developmental and intellectual disabilities (IDD)
2. Understand the role of occupational therapy in enabling IDD to access developmentally appropriate sexual health information and support participation in related occupations
3. List recommendations for developing sex education programs for individuals with IDD
Design: Qualitative study design with interviews and focus groups with four key stakeholder groups. Data were analyzed using a constant comparative approach.
Participants: Participants were 8 youths with IDD, 9 parents, 12 health care providers, and 8 educators.
Results: Four barriers to SE were identified: (1) values and cultural issues, (2) parental attitudes toward their child’s sexuality, (3) a lack of organizational policies and standards, and (4) limited professional education or societal biases. These barriers contribute to a SE context primarily initiated by people with IDD or provided reactively. The participants recommended proactive, formal SE provided by multiple stakeholders throughout adulthood.
Conclusions and Relevance: Stakeholders should advocate for policies, standards, and additional training for parents, educators, and health care providers to support SE for people with IDD throughout adulthood.
What This Article Adds: Barriers to SE contribute to the current context in which SE is shared with people with IDD. Stakeholders can advocate for policies, standards, and training to overcome these barriers and support recommendations for proactive, formal SE provided by multiple stakeholders through adulthood.