Barriers to Sexuality for Individuals with Intellectual and Developmental Disabilities: A Literature Review

Abstract: Individuals with intellectual and developmental disabilities (ID/DD) experience multiple barriers that may prevent them from understanding and exploring their own sexuality. These barriers prevent them from achieving the same autonomy and quality of life as their peers. This research synthesis focuses on 13 articles published between 2000 and 2013 that explored sexuality of individuals with ID/DD. Analysis of these articles produced common barriers that individuals with ID/DD experience. Implications for practice are discussed. Despite the recent focus on quality of life for individuals with intellectual and developmental disabilities (ID/DD) and an emphasis on full inclusion, relatively little is known about issues of sexuality for this population. Individuals with ID/DD face many barriers during their development into and in adulthood, including accessing their own sexuality. Unfortunately, the barriers that individuals with ID/DD face are often reinforced by the lack of attention and common misconceptions regarding sexuality and sexuality education. There are multiple explanations for this lack of attention to sexuality. Common social misconceptions may reinforce myths that portray individuals with disabilities as incapable of being sexually active, incapable of understanding the complexities of sexuality, or even deny the existence of sexuality as a part of their lives A place to begin dispelling these myths is by clearly defining and describing components of sexuality. Comprehensive sexuality education empowers individuals with ID/DD to enjoy personal sexual fulfillment and protect themselves from abuse, unplanned pregnancies, and sexually transmitted infections Excluding individuals with ID/DD from sexuality education is not a viable option for full inclusion into all aspects of life. Review of the previous sexuality research indicates that individuals with ID/DD experience multiple barriers to achieving full autonomy over their sexuality. The barriers in place threaten an individual's knowledge, experiences, and decision-making surrounding sexuality. This further restricts an individual's overall quality of life (QOL). Viewing sexuality of individuals with ID/DD through a QOL framework provides the opportunity to promote full citizenship and autonomy. Framework and Theoretical Foundation Societal inclusion and equitable access are key concepts within the quality of life framework. Schalock, Gardner, and Bradley (2007) state: At its core the Quality of Life (QOL) concept makes us think differently about people at the margin of society and how we might bring about change at the organizational, systems, and community levels to enhance people's personal well-being and to reduce their exclusion from the societal mainstream. (p. 3) This framework requires us to ensure that all individuals receive the opportunity for education along with relation and identity exploration Individuals who support QOL for individuals with ID/DD can promote the concept of intimate citizenship. Intimate citizenship is defined as "the control (or not) over one's body, feelings, relationship: access (or not) to representations, relationships, public spaces, etc; and socially grounded choices (or not) about identities, and gender experiences" (Siebers, 2012, p. 38). Stated otherwise, intimate citizenship is the control over one's body and choices made in context with that body. Intimate citizenship is aligned with the concept of citizenship; "a person's full membership in a community, with a choice of participation or non-participation in a said community, and with access to knowledge that would enable such a person to make wellinformed decisions in all areas of life" (Gougeon, 2009, p. 279). From an intimate citizenship perspective, individuals with ID/DD need to have full access and participation in decisions regarding all aspects of sexuality (e.g., relationships, identity development, and sexual orientation). That access spans not only to sexuality education but also to the greater realm of everyday life. Unlike other aspects of adulthood such as employment, postsecondary education, or independent living, decisions about sexuality are more likely to be scrutinized (World Health Organization Guidance note, 2009), and the lack of equal access becomes more prevalent for individuals with ID/ DD. The idea that individuals with disabilities should have access to full citizenship is not new; however, when it comes to access to sexuality, what once was a black and white issue becomes grey for some Sexuality of individuals with ID/DD has not been a major focus for the disability field. The lack of attention on an important topic makes a review of the current research necessary to provide researchers and practitioners with information that can advance practices to ensure programs and practices include access to sexuality for individuals with ID/DD. This research synthesis will examine the barriers to accessing sexuality experienced by individuals with ID/DD. The overarching research question we posed was: "What are the barriers that individuals with ID/DD face when accessing sexuality and sexuality education?" Answering this question will lay a foundation for creating a state of equitable access to sexuality. Method A research synthesis was conducted to examine the published research educational practices and perceptions of sexuality for individuals with ID/DD. Using a quality of life framework, the current study describes barriers that have been experienced by individuals with ID/DD in gaining knowledge of sexual- / Education and Training in Autism and Developmental Disabilities-March 2015 ity, sexuality-related topics, and experiencing relationships. For the purpose of this research, we define sexuality broadly to include biological, social, psychological, spiritual, ethical, and cultural dimensions Multiple steps were taken to identify the articles included for this review. Our first step was identifying databases to search. PsychInfo, PubMed, and ERIC were identified as the three publication databases because they are commonly used for sexuality, education and disability related scholarship. A cross-disciplinary publication search was important so that information gathered from multiple academic communities could be considered for this particular synthesis. PsychInfo was the database that produced the majority of relevant publications. Our next step was to identify the search terms for our review. The primary search terms used in each database included either intellectual disabilities or developmental disabilities (the population in focus for this literature review) and additional search terms were: disability, sex education, sexuality, sexual orientation, adolescent, and young adults with disabilities. This search yielded 32 publications across the databases queried. We expanded our search terminology to include: decision-making, puberty, and sexuality education, which yielded additional articles. By consistently using intellectual and/or development disability we were able to select studies focused on the population of interest. After identifying our search terms, we identified the range of dates for this literature review. We limited the scope to include only literature published between 2000 and 2013. This timeframe was chosen for a several reasons. First, the search would result in the most current information available in regards to sexuality and intellectual/developmental disabilities. Second, this recent research reflects current societal trends and attitudes towards sexuality, and in addition is reflective of current special education practices. Lastly, whereas other literature reviews such as those conducted by Our fourth step was to exclude articles that were not peer reviewed. During this step we also read for evidence of the quality indicators for qualitative (Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005) and singlecase designs Lastly, we did not exclude any article due to participant age. Our research synthesis is focused on barriers to accessing sexuality and sex education. We believe these barriers can be experienced across the life span and did not identify age as an inclusion/exclusion criterion. Furthermore, for articles to be included in this synthesis, the research conducted in each article had to address individuals' with ID/DD access to sexuality, sexuality education, and/or knowledge of sexuality. Fifty-three total articles were found in our search. Only 13 articles met all of our inclusion criteria (see Barriers to Sexuality /

Employer Perspectives and Attitudes Toward Hiring Individuals with Disabilities: Preliminary Results of an Employer Survey

This session described the results of a systematic literature review of employer attitudes and perspectives toward hiring individuals with disabilities and how the review was used to inform a new employer survey. Attention was given to inclusion criteria, articles included in final search, and strategies and best practices for promoting employment prospects for individuals with disabilities as evidenced from the literature

Stakeholder Perspectives on the School Experiences of Students With Traumatic Brain Injury: The Effects of COVID-19 Pandemic on Service Delivery

Background: For students with traumatic brain injury (TBI), the COVID-19 pandemic exacerbated challenges they were already experiencing at school. Methods: This qualitative study employed focus groups and interviews with students, parents, school, and medical personnel to explore the school experiences of students with TBI. Thematic qualitative analyses were used. Results:Key themes from the analysis include (a) incidence of brain injuries decreased; (b) screen time for students with TBI exacerbated symptoms; (c) COVID protocols at school made it difficult for educators to identify and provide accommodations for students with TBI; (d) COVID protocols at school could inadvertently exacerbate mental health difficulties after a TBI; and (e) COVID-related logistics increased the time between an injury and return to school or return to play. Implications for School Health Policy, Practice, and Equity: The results from this study suggest that professional development for teachers supporting students with TBI is needed, especially for online learning environments. Additionally, because mental/behavioral health concerns may arise for students with TBI in online learning environments, school health care providers can work with families to assess a student\u27s mental health, making referrals to appropriate supports. Conclusions There is a significant need for professional development and school-wide infrastructure supportive of students with TBI

Management of Return to School Following Brain Injury: An Evaluation Model

Traumatic brain injury (TBI) affects children’s ability to succeed at school. Few educators have the necessary training and knowledge needed to adequately monitor and treat students with a TBI, despite schools regularly serving as the long-term service provider. In this article, we describe a return to school model used in Oregon that implements best practices indicated by the extant literature, as well as our research protocol for evaluating this model. We discuss project aims and our planned procedures, including the measures used, our quasi-experimental design using matched controls, statistical power, and impact analyses. This project will provide the evidential base for implementation of a return to school model at scale. Highlights: Traumatic brain injury can significantly affect educational and social functioning. Schools provide long-term services to children with traumatic brain injuries. A research protocol is described for evaluating a return-to-school model. Propensity scores are used within a matched comparison group design

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In this paper, we describe the conceptualization and development of the Secondary Transition Fidelity Assessment (STFA), a measure intended for use by high school leadership teams to examine secondary programs and practices demonstrated by research to lead to meaningful outcomes for secondary students with and without disabilities. We describe our conceptualization and development efforts, which resulted in a measure with six critical features: adolescent engagement, district-level capacity, school-level capacity, community engagement, family engagement, and professional capacity. Based on stakeholder feedback, we revised the STFA and developed an instruction manual and action planning guide to support the self-evaluation of secondary programs and practices using data from the STFA. Recommendations for the field related to research, policy, and practice are provided

sj-docx-2-cde-10.1177_21651434231163498 – Supplemental material for Conceptualizing and Developing the Secondary Transition Fidelity Assessment to Support Transition Programming and Practice

Supplemental material, sj-docx-2-cde-10.1177_21651434231163498 for Conceptualizing and Developing the Secondary Transition Fidelity Assessment to Support Transition Programming and Practice by Valerie L. Mazzotti, Mary E. Morningstar, Allison Lombardi, Sheida K. Raley, Dawn A. Rowe, Marcus Poppen, Kyle Reardon, Sarah R. Carlson, Deanne Unruh, Jessica Monahan, Jessica G. Rousey, Janie N. Vicchio and David W. Test in Career Development and Transition for Exceptional Individuals</p