Although the Individuals With Disabilities Education Improvement Act (IDEA) mandates parent participation in their children’s education programs, the implementation of IDEA results in parent effort ...beyond participation, specifically, an expectation of advocacy. To date, research on the advocacy expectation is mixed, with some parents perceiving advocacy as an obligation to ensure appropriate services for their children, whereas others argue it is unreasonable and has cultural dissonance, disadvantaging some parents. We examined parent perspectives of the advocacy expectation in special education through 19 focus groups with 127 parents of children with disabilities across four states. Findings included a nuanced understanding of the advocacy expectation, with participants reporting the importance of advocacy and some describing that advocacy was part of their social role. However, under adversarial circumstances with school personnel, participants described feeling overwhelmed because the advocacy expectation felt more difficult than it needed to be. We discuss implications for policy and practice.
Friendships are personally valuable and developmentally important relationships for all people, yet friendships between students with and without intellectual and/or developmental disabilities (I/DD) ...remain infrequent, even in inclusive settings. Extant research indicates that opportunity barriers may play a more prominent role in friendship development than the social skills of students with I/DD. Furthermore, friendships are reciprocal and mutual relationships involving two or more people. Thus, I situated this study within the social context for friendship rather than focusing only on the skills—and presumed deficits—of students with I/DD. As peers without disabilities are an integral part of that social context, I examined nondisabled students’ perspectives on friendship via four focus group interviews with 44 first to eleventh graders. Thematic findings indicated that students with I/DD were not viewed as potential friends and that students with and without I/DD had few opportunities to interact authentically.
Due to systemic barriers, Spanish-speaking (versus English-speaking) parents of children with disabilities are less likely to participate in educational decision-making. However, little research has ...directly compared special education experiences between both populations. The purpose of this study was to explore the differences and similarities between Spanish-speaking (
n =
12) and English-speaking (
n =
44) parents of children with disabilities. Specifically, six focus groups were conducted in either English or Spanish in two states. There were three main findings: exacerbated negative experiences (e.g., disempowerment and lack of teacher knowledge) for Spanish-speaking (versus English-speaking) parents, unique communication barriers among Spanish-speaking families and shared barriers among English- and Spanish-speaking parents. Implications for research and practice are discussed.
In the past, parents of children with disabilities have spearheaded several policies for individuals with disabilities. However, little is known about their experiences with legislators. To address ...this gap, focus groups and surveys about legislative advocacy were conducted with 127 parents of individuals with disabilities across four states. The purpose of the study was to explore parent perceptions about experiences with legislative advocacy including the frequency of, strategies for, and barriers to legislative advocacy. Descriptive statistics were conducted to analyze the survey data; constant comparative analysis was used to analyze the focus group data. Participants reported engaging in various forms of legislative advocacy. Participants shared positive and negative experiences interacting with legislators, including individual and collective advocacy efforts. Some participants did not engage in legislative advocacy due to intimidation. Relationships facilitated legislative advocacy for participants. Implications for future research about legislative advocacy and practices to facilitate legislative advocacy are discussed.
Although parent involvement is a cornerstone of the Individuals with Disabilities Education Act (IDEA), few individual parents of children with disabilities participate in civic engagement to voice ...their suggestions for the next IDEA reauthorization. To address this gap, a civic engagement training was conducted with 95 parents of children with disabilities across four states. At the end of the training, participants completed videotaped testimonials voicing their suggestions for the next IDEA reauthorization. Participant suggestions clustered around three themes: expanding IDEA to address specific concerns; adding text to provide specificity and clarity in IDEA; and implementing the current version of IDEA. Implications for research and policy are discussed.
The purpose of this qualitative study was to examine perceptions of adult sibling relationships with a brother or sister with severe disabilities and the contexts affecting the relationships. Adult ...siblings without disabilities (N = 79) from 19 to 72 years of age completed an online survey with four open-ended questions about their relationship with their brother or sister with intellectual and developmental disabilities (IDD) and extensive or pervasive support needs. Inductive analysis yielded findings related to perceptions of the sibling relationship and contexts that influence the sibling relationship. More than half of the relationships were described as being close. The emotional impact of the relationships included feelings of guilt and joy, as well as frustration and stress that were often related to current caregiving and future planning responsibilities. The contextual factors influencing relationship development included several characteristics of their brother or sister with IDD related to his or her disability, as well as sibling proximity. Implications for research and practice related to sibling relationships are provided for professionals, families, and the siblings themselves.
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.
Given the expertise of parents of children with intellectual and developmental disabilities (IDD), it is important to include their voices in disability legislation. Although, historically, parents ...of children with IDD have spearheaded disability policy, in the past few decades, parent legislative advocacy has been minimal. In this study, we evaluated the effectiveness of a legislative advocacy program for parents of individuals with IDD. Specifically, using an intervention and wait list control group, we sought to determine whether the legislative advocacy program resulted in increases in special education knowledge, empowerment, and civic engagement. We found that intervention (vs. the wait list control) group participants demonstrated significant increases in special education knowledge and empowerment. Implications for research, policy, and practice are discussed.
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.
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.
