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In the wake of the COVID-19 pandemic, schools shifted to nontraditional education overnight, disrupting learning for millions of children in the United States. Despite the broad impact of these shifts in schooling, its effects have not been uniform. How would the specialized instructional supports known to be effective in meeting the needs of students with extensive support needs (ESN) be provided remotely? We interviewed eight mothers of students with ESN to learn how nontraditional education impacted the educational experiences of students with ESN. Our findings included the overall perception that nontraditional education was highly unsuccessful and could not replace in-person learning for participants' children. Findings also highlighted challenges participants experienced when working to support their children's at-home learning, as well as the unexpected benefits participants reported from remote service delivery that may be considered as future recommendations of instructional practices for students with ESN.

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.

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.

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.

Parent advocacy has led to improved educational access and outcomes for students with disabilities. Extant research indicates that parents are more likely to participate in individual advocacy than systemic advocacy. Due to the preponderance of individual advocacy, limited research has focused on systemic advocacy. Thus, the purpose of this study was to explore individual and systemic advocacy among parents of children with disabilities. Prior to attending a training on civic engagement, 127 parents from four states participated in English- or Spanish-speaking focus groups. Results indicated participants more frequently engaged in individual advocacy than systemic advocacy and utilized a greater variety of individual advocacy strategies. Additionally, parent advocacy can be developmental, moving from individual to systemic efforts. Participants also identified barriers and facilitators impacting their systemic and individual advocacy. Implications for future 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.

All parents of eligible students with disabilities have the right to collaborate as equal members of educational teams developing their children's Individualized Education Programs (IEP). However, culturally and linguistically diverse families typically experience barriers to collaboration with school professionals. In this paper, we describe findings from four focus group interviews with Chinese, Vietnamese, and Haitian immigrants examining their participation and language access in their children's IEP meetings, as well as their perspectives on what would improve their IEP meetings. Findings revealed that meaningful engagement was hampered by families' limited access to information, educators' lack of accountability, and limited opportunities for families to develop as advocates. Implications of the research addressing the within-meeting and between-meeting barriers are discussed.

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.

Within special education policy and practice, parents are expected to advocate for their children to receive appropriate special education and related services. However, the majority of parents report feeling disempowered to advocate; families from culturally and linguistically diverse (CLD) backgrounds may feel especially disempowered. Federally funded Parent Training and Information Centers (PTIs) exist in each state to empower historically underserved (including CLD) parents of children with disabilities. In this study, we examined how PTIs educate and empower CLD families through semi-structured interviews with 13 PTI staff members who work with CLD families across five states. The participants emphasized the importance of strategies such as conducting outreach in local communities and developing parent leaders among the CLD families they support. The findings also indicated that PTIs struggle with addressing external, systemic barriers which influence CLD families. Implications for research, policy, and practice are discussed.

Despite increased attention and research during the past three decades, systemic barriers continue to hamper meaningful collaboration between school personnel (e.g. teachers, consultants) and culturally and linguistically diverse families of children with intellectual and/or developmental disabilities (I/DD). In this critical review of recent research, we address both the ideal of culturally responsive family-professional partnerships and the frequent reality of persistent systemic barriers, adversarial interactions, and the expectation of advocacy (rather than participation) by families. We highlight the cultural mismatch and inherently hierarchical nature of formal interactions with school personnel. Framed by a life span approach and drawing from our research and first-hand experiences shared as testimonios, we provide descriptive examples and make recommendations for structural change to improve family-school collaboration and outcomes for children with I/DD. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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.

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.

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. [ABSTRACT FROM AUTHOR]

Purpose: Friendships are enjoyable and desirable relationships with personal and developmental benefits for all people. However, individuals who use augmentative and alternative communication (AAC) experience barriers to developing and maintaining friendships. Speech-language pathologists (SLPs), with expertise in communication, social pragmatics, and AAC, are uniquely qualified to support friendship for individuals who use AAC. This clinical focus article provides a background on friendship and friendship development generally, then outlines considerations for SLPs to support individuals who use AAC to develop and maintain authentic friendships with peers across the lifespan. Conclusions: Communication with peers is an essential component of friendship development and maintenance. SLPs should recognize that they have clients on their caseloads who desire friendship and who likely experience barriers to developing or maintaining friendships. When SLPs have a friendship mindset, they identify authentic, motivating opportunities for social interaction; provide the needed tools, including AAC, to support communication within those opportunities; and target communicative competence as part of treatment. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Although parents of individuals with multiple disabilities have spearheaded legislation for students with disabilities, little is known about their legislative advocacy experiences with respect to adult disability policy and, relatedly, adult disability services. In this pilot study, we examined the perspectives and experiences of nine parents of youth with multiple disabilities with respect to legislative advocacy via two focus groups. Most participants had negative perceptions of their: legislators, adult disability policies, and, relatedly, adult disability services. Many participants suggested changes to increase the flexibility of Medicaid Home and Community Based Services. Directions for future research and practice are discussed. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]