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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., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Roughly 40% of those with intellectual/developmental disabilities (IDD) have mental health needs, twice the national average. Unfortunately, outpatient mental health services are often inaccessible, increasing reliance on hospital-based services. While telemental health services hold potential to address this gap, little is known about the effectiveness of telemental health for the diversity of persons with IDD, especially as it relates to crisis prevention and intervention services. Accordingly, the aims of this study are to: (1) compare telemental health versus in-person crisis prevention and intervention services among people with IDD; and (2) understand if outcomes vary across subpopulations, in order to identify potential disparities., Methods: This study will take place within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention for people with IDD. A total of 500 youth and adults, located across nine states, will be randomized 1:1 to telemental health vs. in-person. Participant inclusion criteria are ages 12-45 years, living in a family setting, and newly enrolled (within 90 days) to START. Outcomes will be assessed, using a non-inferiority design, for up to 1 year or until discharge. The intervention is comprised of four components: (1) outreach; (2) consultation/coping skills; (3) intake/assessment; and, (4) 24-hour crisis response. The in-person condition will deliver all components in-person. The telemental health condition will deliver components 1 & 2, via telephonic or other communication technology, and components 3 & 4 in-person. Outcomes include mental health crisis contacts, mental health symptoms, emergency psychiatric service use, perceived quality of mental healthcare, and time to discharge., Discussion: To our knowledge, this will be the first trial of a telemental health crisis program for the IDD population. The study will be executed by an interdisciplinary team of experts that includes persons with lived experience of disability. Understanding the benefits of specific telemental health methods has important implications to the design of interventions. This telemental health study offers promise to address disparities in access to mental health care for people with IDD across diverse racial, ethnic, linguistic, and cultural groups., Trial Registration: Clinicaltrials.gov ( #NCT05336955 ; Registration Date: 4/20/2022)., (© 2023. The Author(s).)

Background: Telehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers., Objective: What factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services?, Methods: Retrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status., Results: Age (ages 23-30 years) and sole caregiver status were significantly associated with limited access (both p ≤ .001). Age (ages 23-30 years and ≥31 years, p < .001), race (Black or African American, p = .001), ethnicity (Hispanic, p = .004), and sole caregiver status (p < .001) were significantly associated with poor access., Conclusions: Disparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH., Competing Interests: Conflicts of interest The authors have no conflicts of interest or other disclosures to report., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Aim: To investigate associations between participation-related constructs and participation frequency and involvement in inclusive schools., Method: In this cross-sectional study, teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties, completed measures. Participation-related constructs were measured using the School Participation Questionnaire; participation frequency and involvement were measured using the Participation and Environment Measure for Children and Youth. A series of multilevel linear mixed-effects regression models with maximum likelihood estimates and bootstrap confidence intervals with p-values were obtained. Final models included participation-related constructs and participation, controlling for demographic and diagnostic confounders (including age, sex, language, level of school support, and autism)., Results: Six hundred and eighty-eight children (448 [65.1%] males; mean age 8 years 7 months [range 4 years 10 months-12 years 13 months, standard deviation 2 years 1 months]) were assessed by 252 teachers. Across a series of models, participation-related constructs were consistently associated with more intensive participation (competence, environment, identity p < 0.001; symptoms p = 0.007), independent of confounders. More frequent participation remained associated with three of four participation-related constructs (competence, identity p < 0.001; environment p = 0.021). Age (p = 0.046), language (p = 0.002), and level of school support (p = 0.039) also remained significantly associated with frequency of participation., Interpretation: Children with additional support needs in inclusive schools may have several participation barriers. Policies and interventions to improve participation are needed., What This Paper Adds: Across a series of models, participation-related constructs were associated with frequency and intensity of participation. Only participation-related constructs were associated with participation intensity. Demographic and diagnostic variables were associated with frequency, not intensity, of participation. Teacher assessment is valid for assessment of participation and participation-related constructs., (© 2022 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

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., (© 2021 John Wiley & Sons Ltd.)

Background: The purpose of this study was to identify potential barriers to patient reported outcome measure (PROM) adoption with youth and young adults with intellectual and/or developmental disabilities (IDD) and to understand current PROM adoption patterns of paediatric practitioners working with this population., Methods: We used a web-based survey to collect data from paediatric practitioners who work with youth with IDD about factors influencing the adoption of PROMs and the frequency of PROM use across age groups (elementary, middle school and high school/transition age) and practice settings (school and rehabilitation)., Results: A total of 113 paediatric practitioners (occupational therapist = 48, physical therapist = 32, physician = 16, other = 17) responded to the survey with an average of 15 years of experience working with youth ages 8-21 with IDD. Accessibility and appropriateness, psychometric evidence, and time were most frequently ranked among the top three factors that influence practitioners' adoption of PROMs. Practitioners reported 'never or rarely' using PROMs 39%-65% of the time across age groups., Conclusions: Our results suggest that paediatric practitioners may be infrequently using PROMs with youth with IDD because of perceived inaccessibility and time requirements of PROMs and practice-environment barriers, including access to evidence and caseload demands. Because PROMs can facilitate client-centred care, addressing these potential barriers to adoption may improve paediatric rehabilitation., (© 2021 John Wiley & Sons, Ltd.)

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., (© 2020 John Wiley & Sons Ltd.)

People with intellectual disability (ID) are increasingly involved in stakeholder-engaged research, such as "inclusive research" (IR). To understand the processes that foster and maintain IR with individuals with ID, we used a narrative interview approach with co-researchers with ID ( n = 6) and academic researchers ( n = 8). We analyzed the data using grounded theory principles. We then developed a model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. We observed that team members' values and characteristics are foundational to IR and drive a commitment to accessibility. Contextual factors, including funding and partnership duration, influence teams' processes and structures. These processes and structures influence the extent to which co-researchers perceive the IR team to be cofacilitated or academic-facilitated. Co-researcher involvement is partially maintained by perceived personal and societal benefits. Optimizing the relationship between these factors may support involvement of people with ID in stakeholder-engaged research projects.

Aim: Project TEAM (Teens making Environment and Activity Modifications) teaches transition-age young people with developmental disabilities, including those with co-occurring intellectual or cognitive disabilities, to identify and resolve environmental barriers to participation. We examined its effects on young people's attainment of participation goals, knowledge, problem-solving, self-determination, and self-efficacy., Method: We used a quasi-experimental, repeated measures design (initial, outcome, 6-week follow-up) with two groups: (1) Project TEAM (28 males, 19 females; mean age 17y 6mo); and (2) goal-setting comparison (21 males, 14 females; mean age 17y 6mo). A matched convenience sample was recruited in two US states. Attainment of participation goals and goal attainment scaling (GAS) T scores were compared at outcome. Differences between groups for all other outcomes were analyzed using linear mixed effects models., Results: At outcome, Project TEAM participants demonstrated greater knowledge (estimated mean difference: 1.82; confidence interval [CI]: 0.90, 2.74) and ability to apply knowledge during participation (GAS: t[75]=4.21; CI: 5.21, 14.57) compared to goal-setting. While both groups achieved significant improvements in knowledge, problem-solving, and self-determination, increases in parent reported self-determination remained at 6-week follow-up only for Project TEAM (estimated mean difference: 4.65; CI: 1.32, 7.98). Significantly more Project TEAM participants attained their participation goals by follow-up (Project TEAM=97.6%, goal-setting=77.1%, p=0.009)., Interpretation: Both approaches support attainment of participation goals. Although inconclusive, Project TEAM may uniquely support young people with developmental disabilities to act in a self-determined manner and apply an environmental problem-solving approach over time., What This Paper Adds: Individualized goal-setting, alone or during Project TEAM (Teens making Environment and Activity Modifications) appears to support attainment of participation goals. Project TEAM appears to support young people with developmental disabilities to apply an environmental problem-solving approach to participation barriers. Parents of young people with developmental disabilities report sustained changes in self-determination 6 weeks after Project TEAM., (© 2018 Mac Keith Press.)

Background: There is a need for mentoring interventions in which transition-age youth and young adults with intellectual and/or developmental disabilities (I/DD) participate as both mentors and mentees. Project TEAM (Teens making Environment and Activity Modifications) is a problem-solving intervention that includes an electronic peer-mentoring component., Methods: Forty-two mentees and nine mentors with I/DD participated. The present authors analysed recorded peer-mentoring calls and field notes for mentee engagement, mentor achievement of objectives and supports needed to implement peer mentoring., Results: Overall, mentees attended 87% of scheduled calls and actively engaged during 94% of call objectives. Across all mentoring dyads, mentors achieved 87% of objectives and there was a significant relationship between the use of supports (mentoring script, direct supervision) and fidelity., Conclusions: Transition-age mentees with I/DD can engage in electronic peer mentoring to further practice problem-solving skills. Mentors with I/DD can implement electronic peer mentoring when trained personnel provide supports and individualized job accommodations., (© 2017 John Wiley & Sons Ltd.)

The purpose of this study was to examine the role of the self-disclosure process in regard to connection development and relationship quality in peer mentoring relationships between transition-age youth (ages 15-20) and young adults (ages 18-36) with intellectual and/or developmental disabilities. Self-disclosure is defined as "the disclosure of inner feelings and experiences to another person" that "fosters liking, caring, and trust, thereby facilitating the deepening of close relationships" ( Reis & Shaver, 1988 , p. 372). Nine peer mentoring dyads with varied interpersonal connections were purposefully selected from a larger intervention study. Recorded mentoring conversations were analyzed for self-disclosure content and peer mentor response. The findings demonstrated trends related to connection development and differences across degree of connection. In relationships with stronger connections, there was a higher quantity of self-disclosure and more frequent disclosure of emotions, and peer mentors responded more frequently with advice and reciprocated self-disclosure. Implications of findings for promoting higher-quality peer mentoring relationships are discussed.

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 Activity and Environment 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.

OBJECTIVE. We compared the functional performance of children with autism spectrum disorders (ASD), intellectual and developmental disabilities (IDD), and without disabilities using the revised Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) Social/Cognitive, Daily Activities, and Responsibility domains. METHOD. A nationally representative sample of parents of children ages 0-21 without disabilities (n = 2,205), with ASD (n = 108), or with IDD (n = 150) completed an online survey. We obtained predicted PEDI-CAT scaled scores for three reference ages (5, 10, 15) from a modified analysis of covariance model and compared each group's scores using contrasts of the regression parameters. RESULTS. We found no significant differences between the ASD and IDD groups. The group with ASD demonstrated significantly lower performance than the group without disabilities across the three domains at ages 10 and 15. CONCLUSION. Scores on the PEDI-CAT differentiated the group with ASD from the group without disabilities. Children with ASD and IDD did not demonstrate different performance profiles., (Copyright © 2012 by the American Occupational Therapy Association, Inc.)

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.

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.]

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.

Strengths-based clinical practices are critical for supporting the wellbeing of individuals with intellectual and/or developmental disabilities. The VIA Inventory of Strengths ('VIA Survey') is an assessment grounded in positive psychology that may contribute to strengths-based practices. To identify how this assessment is used in clinical practice with individuals with intellectual and/or developmental disabilities, we conducted focus groups (n = 15) with clinicians who have used this survey with this population. We also asked individuals with intellectual and/or developmental disabilities (n = 36) to comment on the process of completing the VIA Survey. We found that clinicians utilize the VIA Survey with individuals with intellectual and/or developmental disability to foster self-esteem and self-understanding, provide a framework for understanding strengths, communicate across service systems and shape strengths-based interventions. Individuals with intellectual and/or developmental disabilities also endorsed use of the survey to increase their self-knowledge and self-esteem. Future research should address accessibility of the survey to foster greater uptake and propose standard protocols for independent survey completion. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]