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Introduction: Quality services for persons with intellectual and developmental disabilities and mental health needs (IDD-MH) requires timely access to services that are responsive to their needs and preferences. This study explores virtual service delivery from the perspectives of family caregivers of persons IDD-MH during the onset of the COVID-19 pandemic. Methods: Recorded clinical interviews from 577 family caregivers, collected as part of START (Systemic, Therapeutic, Assessment, Resources, and Treatment) service implementation between March and July 2020, were retrospectively analyzed using a qualitative content analysis approach. Results: Four factors influenced quality: accessibility of teleservices for persons with IDD-MH; confluence of demands on the caregiver setting; telecommunications infrastructure; and adaptability of services. Perceptions fluctuated with the interaction of these factors. Conclusions: While many may benefit from teleservices during future public health emergencies, providers should consider individual, family, community, and service system factors to ensure teleservice access, appropriateness, and accountability for family caregivers of persons with IDD-MH.

Research teams must collaborate with people with intellectual and developmental disabilities to identify effective and inclusive responses to the COVID-19 pandemic and other public health emergencies. Collaborating remotely requires telecommunication and other technologies. We designed and evaluated a digital "Toolkit for Remote Inclusive Research" to provide research teams with evidence-informed strategies to make remote research accessible to and inclusive of people with intellectual and developmental disabilities. First, we completed a rapid scoping review to identify technology used by people with intellectual and developmental disabilities on collaborative research teams. Second, we designed a digital toolkit featuring 23 strategies identified in the review. Third, six inclusive researchers evaluated the toolkit. We illustrate how our team used these evidence-informed strategies during the past year to develop this and other tools to support inclusive research.

Background: We conducted a rapid scoping review to identify how inclusive research teams use technology during the research process that could support remote collaboration during public health emergencies like the COVID-19 pandemic. Method: We searched three databases and conducted a hand search. Two independent reviewers screened 1498 abstracts and titles for inclusion criteria; 81 full text articles were further reviewed; 47 were included. We extracted information about each type of technology, categorised technology used during the research process, and documented described accommodations. Results: We identified 47 articles and 94 examples of technologies used by people with intellectual and developmental disabilities throughout the research process: team formation and team function (38), data collection (19), data analysis (17) and dissemination (20). Conclusions: Technology use by team members with intellectual and developmental disabilities demonstrates promise for remote research collaborations during public health and climate emergencies and teams with members living in diverse locations.

Background: For people with intellectual disabilities and dementia, transitions are likely to become increasingly common as they age. While transitions experienced by people with intellectual disabilities in young adulthood are frequently studied, less is known about transitions in older adults, including residential, vocational and leisure changes. This article aims to explore the experiences of transition from the perspectives of people with intellectual disabilities and dementia, including the impact on their daily lives. Methodology: Three women with intellectual disabilities and dementia living in residential settings participated in participant observations and informal interviews across a variety of environments and activities. Field notes and interview transcripts underwent a thematic analysis focusing on transitions. Findings: Participants experienced the impact of transitions in their residential placements, day programming, leisure activities and relationships. Themes related to their experiences of transitions included making sense of transitions, utilising peer care networks for support and tackling the looming threat of loss and transition. Conclusions: Peer care networks and friendships are crucial in supporting people during and after transitions. Receiving effective supports to maintain relationships, roles and activities, even in seemingly minor ways, is an important right for people with intellectual disabilities and dementia, particularly as care needs increase.

Background: Patient-reported outcome measures (PROMs) are increasingly used in health care to evaluate service quality and client progress. Response scales are a critical component of PROM content validity and must be designed to be relevant and comprehensible by users. Methods: In collaboration with eight youth co-researchers with intellectual/developmental disabilities ages 14-21, we used an iterative, three-stage approach to develop and select a response scale for the PEDI-PRO. Stages: 1) inclusive development of response scale options; 2) Collecting data about response scale options during focus groups with youth with intellectual/ developmental disabilities (n = 62); and 3) Analysing data to refine response options. Results: Through two cycles of the three-stage process, the inclusive research approach led to the development of a content valid response scale that describes functional performance of everyday activities ("very easy," "a little easy," "a little hard"). Conclusion: An inclusive research approach can support the development of content valid PROM scales. We identified four broad strategies that supported youth co-researchers to engage in this response scale development process: universal design for learning, use of lived experiences, breaking down tasks, and peer support. Researchers may adopt and/or adapt the accessible inclusive research approaches described in this manuscript for measurement development and other research projects. [Co-written with the PEDI-PRO Youth Team.]

Background: Young adults with intellectual/developmental disabilities and co-occurring mental health conditions (IDD-MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers. Methods: We conducted exploratory research to develop a PM intervention for young adults with IDD-MH by partnering with 3 young adults with IDD-MH and a seven-member advisory board. In addition, we conducted focus groups with mental health clinicians (n = 10), peer providers (n = 9), and transition specialists (n = 20) to identify the desired PM outcomes and features and content that may facilitate these outcomes. Results: Prioritized outcome: identifying and utilizing leisure activities as coping strategies. PM features: mentors should use relationship- and outcome-driven actions to operationalize a mentee-centred approach. Features and content considerations: safety, mentor matching, degree of structure, mentor training and support, and collaboration with mentees' support teams. Discussion: Findings are aligned with previous research on PM. [This article was co-authored by the Young Adult Mental Health/Peer Mentoring Research Team.]

School-based occupational therapists are well-equipped to prepare adolescents to transition from the education system to work and live in their communities, but they report challenges in securing their place on post-secondary transition planning teams. We argue that occupational therapists' efforts to advocate for their role in post-secondary transition could be strengthened by a deeper engagement with what is considered "best practice" in transition planning: improving students' ability and opportunity to exercise self-determination. In this commentary, we review the self-determination evidence-base; identify congruence between the underlying philosophies of self-determination and occupational therapy; and highlight gaps in existing self-determination models that occupational therapists are uniquely posed to fill by focusing on self-determination as they support transition age students.

Introduction: The Intellectual and Developmental Disability Mental Health (IDD-MH) Research Partnership was created to learn about the experiences and needs of young adults with IDD-MH while accessing and using mental health services. Our national partnership consists of six young adults, five professionals, researchers at Boston University, and representatives from Self Advocates Becoming Empowered and The Arc of the United States. Our partnership worked together virtually for one year. Methods: We designed and conducted a web survey with young adults with IDD-MH ages 18-30 living in the United States (n = 76). We also completed four national storytelling sessions (1 in person, 3 virtual) that included young adults with IDD-MH (n = 10) and parents of young adults with IDD-MH (n = 6). Results: We identified eight priority topic areas for young adults with IDD-MH: Transition to Adulthood, Insurance & Financial Resources, Professionals' Competence, Understanding the Experiences of People who Communicate Differently, Hospitalization, Medication, Alternatives to Medication, and Social Supports. Conclusions: Using what we learned, we generated recommendations to advance research and practice in areas important to young adults with IDD-MH. These recommendations highlight the importance of community-based options, choice, autonomy, and control for young adults with IDD-MH.

Project "TEAM" teaches transition-age youth with developmental disabilities (DD) to identify physical and social environmental barriers and supports, generate solutions to barriers, and request modifications to increase participation. Establishing the social validity of this environment focused intervention with youth and their parents is critical, given the significant shift the intervention represents from rehabilitation's more traditional focus on body structures and function. University researchers and youth research collaborators conducted a participatory evaluation of the purpose, procedures, and perceived benefits of Project "TEAM". Youth with DD (n = 42) provided feedback using three methods: activity voting, a survey, and a focus group. Parents (n = 37) also provided feedback. Results suggest that both youth and parents find Project "TEAM" acceptable and relevant to youth's current and future lives. The majority of youth and parents felt Project "TEAM" fostered independence and empowerment, although some youth and parents reported challenges with the unique environment-focused approach. [This article was co-written with the YELL Lab Project TEAM Youth Research Collaborators.]

The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test is an alternative method for describing the adaptive function of children and youth with disabilities using a computer-administered assessment. This study evaluated the performance of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test with a national sample of children and youth with autism spectrum disorders aged 3-21?years. Parents (n?=?365) completed an online survey that included demographics, the Social Communication Questionnaire, and the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test Social/Cognitive, Daily Activities, and Responsibility domains. Item response theory analysis confirmed items in each domain fit a unidimensional model and few items misfit. A large number of items in the Social/Cognitive domain showed differential item functioning, indicating a unique order of item difficulty in this population in this domain. Differences in item difficulty estimates were addressed through a parameter linking (equating) process. Simulations supported the accuracy and precision of the Computer Adaptive Test. Results suggest that the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test, as modified for autism spectrum disorder, is an efficient and sound assessment for this population.

Research documents the negative impact of physical and social environmental barriers on engagement in school, work, and the community for youth with intellectual and /or developmental disabilities (IDD). Project "TEAM" (Teens making Environment and Activity Modifications) was designed to teach youth to systematically identify environmental barriers, generate modification strategies, and request accommodations. This formative evaluation used a mixed methods expansion design to investigate outcomes, activities, and experiences. Trainees had a significant increase in knowledge of environmental factors and modification strategies but no changes in applied problem-solving. 76% attained at least one goal as measured through goal attainment scaling. Intervention activities ranged in quality. Trainees enjoyed the interactive and applied aspects of Project "TEAM" but found some concepts and materials difficult to understand. Lessons learned from this comprehensive evaluation can inform future revisions to Project "TEAM" and may be equally relevant for other researchers evaluating programs targeting transition-age youth with IDD.

The use of current adaptive behavior measures in practice and research is limited by their length and need for a professional interviewer. There is a need for alternative measures that more efficiently assess adaptive behavior in children and youth with autism spectrum disorders (ASDs). The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) is a computer-based assessment of a child's ability to perform activities required for personal self-sufficiency and engagement in the community. This study evaluated the applicability, representativeness, and comprehensiveness of the Daily Activity, Social/Cognitive, and Responsibility domains for children and youth with an ASD. Twenty professionals and 18 parents provided feedback via in-person or virtual focus groups and cognitive interviews. Items were perceived to represent relevant functional activities within each domain. Child factors and assessment characteristics influenced parents' ratings. In response to feedback, 15 items and additional directions were added to ensure the PEDI-CAT is a meaningful measure when used with this population. (Contains 3 tables.)

Background: Scholars have called for research approaches that actively include and are driven by people with intellectual disabilities, but the process of inclusive data analysis has been scarcely documented in the literature. This paper demonstrates the process university researchers and a group of self-advocates used to analyse and interpret data collected during a participatory action research (PAR) project to increase the group's capacity for self-advocacy. Materials and Methods: University researchers presented numerical data in three visual formats for analysis. Seventeen People First members analysed and interpreted the data using a modified focus group approach. Results: All members participated in data analysis, but not all members participated in data interpretation. Members' interpretations suggest that the group felt an increased sense of empowerment and heightened awareness as a result of their increased capacity to run a meeting and involvement in the PAR cycle of action and reflection. Conclusions: Findings suggest that strategies such as visual representation of data, group analysis, and familiarity with data collection tools foster an inclusive process of analysis and interpretation.

This study explored how children with cerebral palsy describe competent performance in everyday activities and sought to better understand the processes by which the children developed competence. Five children with cerebral palsy aged six to 17 years participated in a three-step procedure that included two observations, one semi-structured interview with narrative elaboration, and one cognitive interview. Three factors influenced the competence of children in this study: the environment--people, places, and objects; the quality of the activity--fun and importance; and the child's personal characteristics--strengths and impairments. The process of building competence was characterised by practice and problem-solving. The outcome of this process was being competent or "doing lots of things". Children played an active role by problem-solving impairment-related challenges or environmental barriers. "Doing" was not related to the child's skills or level of independence, but to engagement in activities considered fun and important to the child. (Contains 1 table and 1 figure.)

Social validity is the extent to which procedures, goals, and outcomes are acceptable and important to end users and is not commonly addressed during assessment development. This article pilots a process of triangulating multiple methods to evaluate the social validity of a self-report assessment. These procedures were piloted using the Child Occupational Self-Assessment (COSA), a self-report of everyday activities for children with disabilities. This study collected COSA responses from 502 children with disabilities and conducted observations and interviews with 5 additional children with cerebral palsy. Data were aligned with social validity benchmark statements and integrated using data displays. Social validity was evaluated by examining congruencies and discrepancies in the results. Implications and the legitimacy of design decisions are discussed. (Contains 3 figures, 5 tables, and 3 notes.)