This study aimed to determine the effectiveness of a designed training program for nurses toward early detection of developmental disabilities among children aged 0-3 years. A group of 21 licensed nurses with professional experience ranging from 5-11 years participated in the study. The participants completed the measurements to evaluate their current knowledge, practice, and perception pre- and post-training program, as well as during a follow-up, in relation to early detection of disabilities. The results showed highly statistically significant difference between the studied nurses' total knowledge, perception, and practice in pre- and post-program application (p = 0.01). However, there was no statistically significant difference between the post-program and follow-up application (p = 0.180).

For people with severe or profound intellectual disability (ID), support staff are important interaction partners. The quality of their interactions, a multidimensional construct, is well documented, but the staff perspective remains underexposed. This study aims to capture the behaviors, thoughts, and emotions of staff when interacting with their clients, and their views on what constitutes quality. Thirty-four support staff completed a 5-day diary about a daily interaction with a specific client. A thematic analysis was carried out. The diary entries depicted behaviors and thoughts with different foci, and emotions with positive and negative valences. The pursuit of Harmonization and the experience of Return emerged as overarching dimensions central to staff's views on quality interaction. Limitations and directions for future research are discussed.

Violence prevention approaches using social-ecological models inform interventions for people with intellectual disability, who often face barriers to accessing generalist courses. This study explores the experiences of healthcare professionals leading a prevention course specifically designed for adults with intellectual disability. Through semistructured interviews, 12 Norwegian course leaders highlighted the importance of raising awareness and comprehension about rights, and the social and individual factors influencing experiences of violence and its prevention. Challenges were encountered in tailoring the course to the diverse lived experiences of participants with disabilities and addressing ongoing support needs for their safety. The study suggests that adopting a pedagogical or didactic model could serve as a foundation to enhance the planning and delivery of the course.

Black children and their families encounter systemic disadvantages in their journey to and through an autism diagnosis. Black families often experience social and systemic barriers to service use. Providing family-centered, psychoeducational interventions can reduce barriers to service access and utilization for Black families raising autistic children. Fostering Advocacy, Communication, Empowerment, and Support (FACES) has demonstrated preliminary efficacy in strengthening outcomes among Black families, yet little is known about the long-term impact of the intervention. The purpose of this qualitative interview study was to understand the experiences of FACES graduates 16 months after the intervention. Four major themes emerged: (a) strengthened advocacy, (b) strengthened empowerment, (c) systemic barriers, and (d) home and community barriers. We provide implications for research and practice.

Supported decision making (SDM) is a needed focus of policy and practice to enhance opportunities for people with disabilities to exercise self-determination as they are supported to make decisions about their life. This study used content analysis to analyze five focus groups comprised of 27 adults with intellectual and developmental disabilities (IDD) and 16 family members to understand how people with IDD use supports for decision making and how families support decision making. People with IDD and family members described a range of strategies and supports they used for decision making, including engaging trusted supporters, accessing technology, and using early experiences to build decision-making skills. Findings from this research can inform development of practices and policy to enhance use of SDM in research, policy, and practice.

There is a strong and growing focus on self-determination in French-speaking countries, and this pilot study reports the technical adequacy of the Self-Determination Inventory: Student Report (SDI:SR) French Translation. Data were collected with 471 French-speaking youth with and without disabilities in Canada (Quebec), Switzerland, France, and Belgium. Key findings showed it was feasible to use 20 (of 21) items to represent the self-determination construct in the French-speaking sample. The same set of items function in the same way across students with and without disabilities, and students with disabilities descriptively scored lower. Overall, this study provides promising evidence for reliability and validity of the SDI:SR French Translation and suggests ongoing development and larger-scale testing of the SDI:SR French Translation is warranted.

This article highlights reflections by the author on the importance of considering what we say, do and acknowledge in intellectual and developmental disability research. The goal is to advance thinking that can lead to personal and collective change in our approaches to truly share power and elevate the expertise of people with lived experience with intellectual and developmental disabilities in the movement for equity, inclusion, and disability justice. Implications for inclusive research, policy, and practice are discussed as is the need to engage in personal reflection and build new partnerships for collective change.

This study aimed to understand the ways in which college students with intellectual and developmental disabilities (IDD) experience and develop their understanding of emotions and emotional wellness. Semi-structured interviews with college students with IDD were conducted. The research team utilized consensual qualitative research (CQR) to analyze interviews and came to consensus in generating domains, core ideas, and a cross-analysis to answer the research question, "What are the experiences of college students with IDD in developing an understanding of emotions and emotional wellness?" Findings suggest college students with IDD have experience developing and maintaining their emotional wellness, though they may experience barriers prior to and during college enrollment. Limitations and implications for future research are discussed.

Youth with intellectual and developmental disabilities (IDD) aspire to participate in a variety of activities after high school, such as attaining paid employment, enrolling in postsecondary education, being involved in their communities, living independently, and building friendships. However, complex and longstanding transition barriers require comprehensive solutions that are tailored to a local community's unique needs and available resources so that local youth with IDD may achieve their desired outcomes. This article presents "virtual community conversations" as a promising approach for bringing together local communities to tackle barriers to good outcomes for residents with IDD. Attendees were able to effectively generate innovative recommendations for addressing issues in their local communities. We offer recommendations for enhancing and extending implementation of this approach.

This study used data from the National Longitudinal Transition Study 2012 (NLTS 2012) to explore the future goal aspirations of students with extensive support needs who participate in alternate assessments, compared to other students with extensive support needs and to students with other disabilities. We examined students' individualized education program (IEP)/transition planning meeting experiences and postschool goals in relation to their functional, communication, and self-advocacy skills, as well as their school/community support. Students with other disabilities held higher expectations than all students with extensive support needs for future participation in postsecondary education, employment, independent living, and financial independence. All students had higher postschool goal expectations than their parents. Implications for supporting students with extensive support needs and directions for future research and practice are discussed.

Inclusive research combines the expertise of academically trained researchers with the lived experience of individuals with disabilities to render results that are more accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared. Feedback from members of the research team suggests that including adults with IDD as co-researchers benefited investigators, co-researchers with IDD, and project outcomes. Our case study emphasizes the valuable contributions of research partners with IDD and provides a model that may be adapted and utilized by researchers to enhance their practice.

Although services are critical for many transition-aged youth, it is unclear the extent to which autistic youth participate in decisions about their services. By exploring the perceptions of autistic youth about their role in services, interventions can be developed to improve their participation. In this study, we interviewed 43 transition-aged youth with autism to explore their involvement in decisions about services. Most youth reported not being involved in decision making about the types and modalities of disability services. When youth were involved in decisions, the services were often related to education. Although youth reported that their parents typically spearheaded decisions about services, youth also reported that their parents often listened to their input. Implications for research, policy, and practice are discussed.

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.

People with intellectual and developmental disabilities (IDD) are overrepresented in the criminal justice system both as victims/survivors and as offenders. The needs and circumstances of individuals from underserved communities have received scant attention in the literature. Stakeholders met online at the 2022 State of the Science Conference on Community Living to discuss criminal justice and to identify goals for research involving people with IDD. The group focused more on victimization and less on offenders. Victimization issues examined included prevalence, people from underserved communities, sexual victimization, consequences of victimization, victim compensation, prevention, and risk reduction. Issues regarding offenders included prevalence, people from underserved communities, and competency to stand trial. Future directions are proposed for research on victimization and on offenders.

In the United States, direct support professionals (DSPs) support people with intellectual and developmental disabilities (IDD) so they can live in the community. Thirty years of deinstitutionalization and the development of community living options would not have been possible without DSPs. Although life for people with IDD improved greatly, working conditions, wages/benefits, demands, stress/burnout, and trauma experienced by DSPs have worsened. Turnover and vacancy rates threaten the availability of community supports for too many people with IDD. DSPs from diverse racial, ethnic, linguistic, and cultural backgrounds face significant workplace disparities. These issues were discussed during the Research and Training Center on Community Living's 2022 State of the Science Conference. We propose important research questions needing solutions to continue constructively addressing these critical issues.

Meaningful progress in improving employment outcomes for people with intellectual and developmental disabilities continues to be elusive, despite 40 years of investment in research, policy, and supports. This article reviews the current state of employment for individuals with intellectual and developmental disabilities (IDD) and describes policy, practice, and individual factors that influence employment outcomes. Research suggests the need for a holistic approach to change that addresses systems-level strategy, policy, and fiscal investment while strengthening individual experiences with employment and related day services. Recommendations address strengthening the implementation of employment policy, developing pathways to employment, and engaging individuals with IDD and, in particular, individuals with diverse social characteristics in reflecting on the quality of their experiences and supports.

Family members provide significant practical and emotional support to people with intellectual and developmental disabilities (IDD) across the lifespan. In September 2022, the State of the Science Conference on Community Living: Engaging Persons With Intellectual and Developmental Disabilities From Underserved Racial, Ethnic, Linguistic, and Cultural Groups in Research was held. This article summarizes the efforts of the workgroup that developed research goals related to supporting families of people with IDD. The focus was on families with intersectional identities and minoritized communities. Recommended areas of future research include exploratory research to better understand the experiences of these families, perspectives of families with intersectional identities about the formal support system, funding for family support and services, and inclusive research strategies.

This article describes research on the places people with intellectual and developmental disabilities (IDD) live and disparities in housing and long-term services and supports (LTSS) outcomes for people with IDD from racially and culturally minoritized groups. It also summarizes the conclusions and recommendations of the Housing and Long-Term Services and Supports strand of the 2022 State of the Science Conference on the Intersection of Diversity, Equity and Inclusion and Supports and Services for People with IDD, identifies limitations of the available research and recommends strategies to improve research, knowledge translation, and practices.

While there are many benefits to healthy nutrition, adults with intellectual disability often have poor nutrition habits. The purpose of this pilot study was to examine the use of a nutrition app and self-management intervention to increase awareness of healthy nutrition choices for adults with intellectual disability. Data was gathered on the effectiveness of the intervention and social validity of intervention components. Through a single-case multiple-baseline across participants design, the mobile nutrition app with self-management intervention was effective in increasing awareness of healthier nutrition items for three adults with an intellectual disability. Future research is needed to replicate and generalize findings, as well as explore additional supports that may be needed for individuals who have more extensive support needs.

Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs are interdisciplinary, graduate-level training programs that seek to promote improved outcomes for individuals with disabilities and their families. Many of these programs include individuals with disabilities as members of the self-advocacy discipline. In this study, 10 self-advocate trainees were interviewed to provide insight into the value of including self-advocates in training and the kinds of accommodations and supports that facilitated their success and inclusion. Interviewees endorsed the importance of including self-advocates in LEND programs. Although several accommodations were discussed as helpful, interpersonal supports from faculty and peers were equally important in ensuring their success and inclusion in LEND. The findings from this study provide support for the expansion of self-advocacy as a formal discipline in LEND programs.

Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience their family resilience, and if and how it affects their FQOL. Participants were 64 parents of a person with PIMD from 44 families. Total family resilience, as well as most subscales received positive scores, and also had a significant positive effect on FQOL. These results provide more insight into the family dynamics of families with a child with PIMD, which should inform policies, and provided services for these families.