Intellectual and Developmental Disabilities最新文献

People with intellectual and developmental disabilities (IDD) are disproportionately impacted by potentially traumatic experiences; however, organizations serving this population have lagged in their integration of trauma-informed care (TIC). Trauma-informed care is a systemwide response to the pervasiveness of trauma that frequently requires an organizational shift rooted in staff training. Using an online statewide survey, the present study examined beliefs and training among IDD service providers. Responses from 288 service providers suggested some alignment among beliefs and staff training content with TIC principles. Although the findings indicate a foundation for TIC, intentional efforts are needed for IDD agencies to fully embrace TIC.

Services are critical for youth with autism spectrum disorder (ASD), especially during the transition to adulthood. Under the best of circumstances, though, it can be difficult to access needed adult services. With COVID-19, services were more difficult to obtain and retain. In this study, we explored parent perceptions of accessing new services and maintaining current services during the first year of the COVID-19 pandemic. Structured interviews were conducted with 65 parents of transition-aged youth (aged 16-26) with ASD living in three states (IL, TN, and WI) in the United States. None of the participants reported receiving new services during the pandemic, and many struggled to access services via online applications. In addition, participants reported that service suspensions and changes in modality (e.g., from in-person to telehealth) were spearheaded by professionals and not families. Participants, especially those in TN, were more likely to pay out-of-pocket for services during the COVID-19 pandemic to compensate for service disruptions. Implications for research and practice are discussed.

Changes in the field of intellectual and developmental disabilities (IDD) over the last 5 decades has resulted in the emergence of the shared citizenship paradigm. This paradigm is currently guiding the development of IDD-related policies and practices, and providing a framework for application, research-based inquiry, and evaluation. A shared citizenship paradigm is one that envisions, supports, and requires the engagement and full participation of people with IDD as equal, respected, valued, participatory, and contributing members of every aspect of society. The overall goals of the paradigm are to (a) further advance and focus on people with IDD as active agents in the change process, and (b) improve outcomes for people with IDD, including their access to and opportunity for shared citizenship. This article describes the paradigm's operationalization, application, evaluation, shaping for the future, and specific strategies to overcome implementation challenges.

This scoping review explores (a) barriers faced by immigrant families of children with intellectual and developmental disabilities (IDD) when accessing healthcare-related services in the United States, (b) where research stands based on the health disparity research framework, and (c) implications for future health disparities research with this population. Our scoping review found 26 empirical studies published between 2000 and 2020 that met our inclusion criteria. Data were extracted and synthesized based on the stages of research outlined in the health disparity research framework. Overall, immigrant families experienced barriers on multiple levels including patient, provider, and healthcare system levels. Studies focusing on detecting and reducing disparities are emerging. We conclude with recommendations for future research and practice with immigrant families of children with IDD.

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.

Successful family-professional partnerships (FPP) have been shown to positively impact both satisfaction with care and health outcomes for children with disabilities and their families. Many healthcare training programs have recognized the benefit of FPP training and often include learning experiences that feature families as teachers or mentors. However, most research on FPP training has focused on professionals' experiences, and not on families' experience in the roles of mentors and experts. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is a graduate-level interdisciplinary training program with sites across the country. LEND programs train future healthcare and service professionals in the disability field and often utilize a Family Mentor Experience (FME) as one aspect of their training. This study used qualitative interviews to examine the experiences of eight family mentors who worked with trainees in one LEND program. Overall, the family mentors expressed positive views regarding the FME, describing how it allowed them to connect with trainees, other families, and community resources, as well as educating trainees. Family mentors also identified several facilitators and barriers to participation. Study findings provide information on the FFP's impact on family mentors and guidance on how programs can support sustainable, effective FPP experiences.

Peer-mediated interventions are a powerful and practical way of promoting the social relationships, learning, and inclusion of students with disabilities. In this article, we describe one state's efforts to scale up a research-based, peer-mediated program called Peer to Peer throughout Michigan. Among the more than 700 schools that now offer this program, as many as 18,000 peers are involved in supporting nearly 5,000 schoolmates with autism and other developmental disabilities in their learning and relationships. We share our perspectives on eight key factors that have contributed to the growth and widespread adoption of Peer to Peer over the last 20 years. We discuss enduring challenges in this long-haul work and conclude with recommendations for future research focused on schoolwide peer-mediated programs.

Direct support professionals (DSPs) are deemed by existing literature as vital support to persons with intellectual or developmental disabilities (IDD). They may be exposed to the traumatic experiences of people with IDD with potential psychological implications. Secondary traumatic stress (STS) has been studied among related professionals across human services, but little is known among DSPs. The current study examines the prevalence of STS in a sample of DSPs. The results suggested that DSPs are exposed to traumatic experiences, and exposure to a greater number of traumatized clients is significantly correlated with symptoms of STS. At least 12.4% of DSPs in this sample met the diagnostic criteria for experiencing post-traumatic stress disorder (PTSD) symptoms. Also, results suggest STS differences in DSPs based on demographics.

Evidence-based maternal, infant, and early home visiting (EBHV) is a potential strategy to support parent and child health and well-being among families headed by a parent with an intellectual disability (ID). Little is known about the capacity of EBHV programs to meet the needs of parents with ID effectively. This study examined home visitor practices and perceptions of services for parents with ID. Home visiting staff recruited from a national practice-based research network participated in web-based surveys. Practices and perceptions varied widely across sites and were associated with home visitor knowledge and self-efficacy and site implementation supports, such as policies, curricula, and community collaboration. More work is needed to understand and strengthen EBHV services for parents with ID.

Supportive, informed parenting is critical to improve outcomes of children who experience intellectual and developmental disabilities (IDD). Parents want to learn about their child's condition, needs, and strategies to improve family life. The internet is a valuable resource, but how parents evaluate and apply information is unknown. We conducted focus groups to understand how parents use internet resources to learn about their children with IDD. Parents described using the internet to access information from trusted sources, find examples to apply their knowledge, and seek social support. Social learning theory, which posits that cognitive, behavioral, and social processes influence each other to support real-world learning, could provide a theoretical framework for unifying these findings and for designing efficacious online interventions.