An Equity-Based Research Agenda to Promote Social Inclusion and Belonging for People With IDD.

Having a sense of social inclusion and belonging, typically characterized by our personal relationships and community participation, is the central essence of life for most people, yet it remains elusive for many people with intellectual and developmental disabilities (IDD). This article summarizes the work of a diverse group of researchers and advocates to propose 6 big-picture, equity-based goals to drive future research in the field: (1) understanding the role of intersectionality, (2) understanding intimate relationships, (3) promoting formation of communities of care to support social inclusion, (4) understanding life course trajectories of social inclusion, (5) understanding social inclusion in virtual spaces, and (6) understanding how to promote social inclusion in the entire research process.

Youth and Caregivers' Perspective on Teens Engaged as Mentors (TEAM): An Inclusive Peer Mentoring Program for Autistic Adolescents.

Past studies indicate that many autistic youth benefit from support with developing social relationships, exploring leadership opportunities, and engaging in post-secondary education. Teens Engaged as Mentors (TEAM) is an innovative mentoring program that provides socialization and community engagement opportunities in a safe environment for youth with and without autism. This qualitative study explored how participants and their caregivers perceived participation in TEAM. Stakeholder focus groups were conducted annually from 2016 to 2020 with 16 autistic mentees (ages 9-13), 30 autistic and neurotypical mentors (ages 14-21), and 30 caregivers. Participants reported enjoying TEAM because of increased socialization opportunities, which promoted friendships and openness toward others. Caregivers reported growth in their children's social skills and confidence throughout their participation.

Lessons Learned From Research Collaboration Among People With and Without Developmental Disabilities.

Research related to the developmental disability (DD) community should include collaboration with individuals with DD. Unfortunately, people with DD are infrequently involved in research projects in meaningful ways, and there is little guidance about how to collaborate equitably with researchers with DD. The purpose of this article is to share lessons learned from a collaborative research study among researchers with and without DD using both qualitative and quantitative methods to develop and examine the effectiveness of a civic engagement intervention for transition-aged youth with disabilities. It includes how our research team compensated researchers with DD, clarified team member roles, leveraged the expertise of researchers with DD in using both qualitative and quantitative methods, and integrated technology throughout the research process.

Examining the relation between empowerment and civic engagement among parents of individuals with intellectual and developmental disabilities.

Internationally, parents of children with intellectual and developmental disabilities have historically engaged in advocacy leading to compulsory education for their children. However, few parents have reported civic engagement. Although empowerment is related to parent advocacy, it is unclear whether empowerment relates to civic engagement. Thus, our study examined parent and child correlates of empowerment and civic engagement, and the relation between empowerment and civic engagement among 235 parents of children with intellectual and developmental disabilities across five states in the United States. Gender and special education knowledge were significant correlates of empowerment and civic engagement. There was a significant positive correlation between empowerment and civic engagement. Implications regarding future research and ways to promote parent empowerment and civic engagement are discussed.

Understanding Decision Making Among Individuals With Intellectual and Developmental Disabilities (IDD) and Their Siblings.

Many siblings anticipate fulfilling caregiving roles for their brothers and sisters with intellectual and developmental disabilities (IDD). Given these roles and the importance of supported decision making, it is crucial to understand how individuals with IDD and their siblings make decisions. Using dyadic interviews, we examined the perspectives of nine sibling dyads ( N = 18) about decision making in relation to self-determination, independent living, and employment. The ages of participants ranged from 19 to 57. Data were analyzed using constant comparative analysis to identify themes. Decision making was characterized by: parents and siblings primarily identifying courses of action; the probability of respective consequences based on the person-environment fit; and the role of the sibling in making the final decision. Characteristics related to the individual with IDD, the family, the sibling, and the environment impacted decision making. Individuals with IDD were more likely to make their own decisions about leisure activities; however, siblings were more likely to make formal decisions for their brothers and sisters.

The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities.

BACKGROUND: Siblings of people with intellectual and developmental disabilities (IDD) often assume key roles to support their brothers and sisters. For people with more significant support needs, siblings may undertake additional roles and responsibilities throughout their lives. The purpose of the present study was to identify and describe the roles of adult siblings who have a brother or sister with severe IDD. METHOD: Seventy-nine adult siblings from 19 to 72 years of age completed an online survey with open-ended questions about the roles they play in their relationships with their brother or sister. RESULTS: Thematic analysis resulted in identification of several roles including caregiver, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner and informal service coordinator. CONCLUSION: Siblings assume key roles in the lives of people with IDD and need support from family and professionals to perform these roles.