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Helping professionals have an important role in supporting access to education for individuals regarding health-promoting and responsible sexual behaviors, including context-appropriate masturbation. Sexuality education is limited for people with intellectual and developmental disabilities, despite evidence supporting its place in teaching and supporting positive and appropriate sexual expression. While prior research has identified perception of professionals related to sexuality education and barriers to providing access to these programs and topics, none have identified methods to increase provider effectiveness in responding to sexual behaviors for the people they support. This study evaluated the components of behavioral skills training as a method of teaching Board Certified Behavior Analysts to develop interventions for sexual behavior.

The purpose of this study was to examine the relationship between family leisure involvement and family functioning among families that include children with developmental disabilities. The sample consisted of 154 families (154 parents and 62 youth). Data were analyzed from the parent, youth, and family perspective. The Family Leisure Activity Profile (FLAP) was used to measure family leisure involvement. FACES II was used to measure family functioning. A scale based upon the definition, classification, and systems of support manual of the American Association on Mental Retardation adapted by Dyches was used to measure the level of support needed by the child with a developmental disability. Blocked multiple regression analysis indicated a positive relationship between core family leisure and family cohesion, adaptability and overall family functioning, but the analyses indicated no relationship between balance family leisure and family cohesion, adaptability, and overall family functioning from all three perspectives. Results also indicated that family functioning and family leisure involvement were very similar between traditional families and families including children with developmental disabilities. Implications for practitioners and recommendations for further research are discussed.

INTRODUCTION. Assessing the participation experiences of young people with significant intellectual and developmental disabilities (SIDD) in recreational activities is imperative to ensure these activities provide youth with optimal opportunities to develop skills needed for adulthood. Currently, no instrument accessible to youth with SIDD is available to asses these experiences. The Participatory Experience Survey (PES) and the Setting Affordances Survey (SAS) were developed to meet this need. METHOD. The PES was developed with input from a panel of youth with SIDD while they were participating in a summer program. A draft was then presented to three groups of stakeholders: parents of youth with SIDD, service providers, and experts in intellectual disability and/or program planning. After making revisions based on stakeholder feedback, cognitive interviewing was conducted with eight youth ages 14 – 22 with SIDD. Next, to examine feasibility of the PES, the survey was given to 10 youth with SIDD. After finalizing a draft of the PES based on youth feedback, questions for the SAS were written to align with topics on the PES. Finally, a program evaluation was conducted that provided an additional feasibility evaluation of the PES and SAS. RESULTS. Of the 24 initial questions on the PES, stakeholder groups identified 15 questions needing revision and suggested 7 additional questions. Youth feedback during cognitive interviewing identified 13 questions needing revisions and 4 needing removal. Changes were made to address three issues: word choice, understanding of concept, and questions relating to others. Administering the PES directly following an activity was found to be feasible, however, the length was shortened from 31 to 15 questions to provide an appropriate administration time (<5 minutes). CONCLUSION. The PES and the SAS proved to be relevant, accessible and feasible ways to assess the individual experiences of youth with SIDD in recreational settings and the affordances, measured objectively, of those settings. Use of these two measures may help programs to include young people with SIDD during program evaluations, resulting in better-structured, more supportive programs.

People with intellectual/developmental disabilities experience exclusion from social spaces. In this dissertation, I address social inclusion in: a) research and b) peer relationships in the context of mental health services. To address inclusion in research, we conducted key informant interviews with academic researchers (n = 8) and co-researchers with intellectual disability (n = 6) who have expertise in inclusive research (study 1). Using principles of grounded theory we analyzed the data and developed a conceptual model describing the contextual factors and team-level factors that coalesce to foster and maintain inclusive research collaborations. We found that team members’ values and characteristics influence inclusive research collaborations and drive a commitment to accessibility. Additionally, perceived personal and societal benefits contribute to co-researcher involvement. Contextual factors, including funding and partnership duration, influence teams’ processes and structures. These processes and structures influence the extent to which co-researchers perceive the inclusive research team to be co-facilitated or academic-facilitated. This model describes how contextual and team-level factors and processes may be optimized to support co-researcher engagement in inclusive research. To address peer relationships in the context of mental health services, I used a stakeholder-driven approach to develop a peer mentoring intervention for young adults with intellectual/developmental disabilities and co-occurring mental health conditions (study 2). This approach included partnership with 3 young adults with intellectual/developmental disabilities and co-occurring mental health conditions and a 7 member advisory board composed of self-advocates and professionals. In addition, I conducted focus groups with mental health clinicians (n = 10), peer support specialists (n = 9), and transition specialists (n = 20) to identify the desired peer mentoring outcome and intervention components and content that may facilitate these outcomes. The focus group participants identified several relationship-driven and outcome-driven actions peer mentors may use to support outcome achievement. Stakeholders also identified five components relevant to the intervention: safety considerations, mentor matching, degree of intervention structure, mentor training and support, and collaboration with mentees’ support teams. These findings draw attention to the importance of social relationships and individualization of both mentoring and supports for mentors. Together, these two studies highlight the importance of valuing the unique strengths of people with disabilities and the need for task and environmental adaptations to foster social inclusion of people with intellectual/developmental disabilities. / 2021-06-18T00:00:00Z

Sleep is vital for optimal physical and mental health, as well as cognitive and social functioning. Young adults with developmental disabilities (DD) are at greater risk for physical and mental health disorders and experience limitations in cognitive and social functioning in ways that can prevent participation in meaningful activities associated with young adulthood. Sleep literature has reflected that persons with DD experience worse sleep than persons without DD. Suboptimal sleep could compromise functionality and thus participation in young adulthood activities. Not much is known however of the nature of sleep problems experienced by young adults with DD. This study is a short-term longitudinal descriptive study on the sleep of young adults with DD using actigraphy. Results identify potential sleep problems with getting enough sleep and maintaining sleep. With a better understanding of sleep issues, efforts can be made to improve the sleep, functionality, and outcomes for young adults with DD.

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