A Call-In for Allyship and Anti-Ableism in Intellectual Disability Research.

Provoked by decades of grassroots activism, anti-ableist work is underway to advance disability rights. Intellectual disability (ID) researchers can integrate these social changes into their work by interrogating and transforming the beliefs and practices that underpin ID research. We share actionable ideas to foster anti-ableism and allyship in ID research. These include: (1) Learn from and nurture long-term, mutual relationships with people with ID; (2) Amplify the voices of people with ID in institutional structures that influence research; (3) Infuse anti-ableist frameworks into our own research; and (4) Embody a career-long commitment to disability rights, reflexive practice, and growth.

'Being a part of something': Experiences and perceived benefits of young adult peer mentors with intellectual/developmental disabilities and co-occurring mental health conditions.

BACKGROUND: Peer-provided services are a common model for addressing mental health concerns. Peer providers report a range of benefits and challenges associated with their role. However, there is little information about the experiences of peer providers with intellectual/developmental disabilities. AIM: To explore the experiences of young adult peer-providers with intellectual/developmental disabilities in the context of a mental health intervention. METHODS: We conducted interviews with four young adults with intellectual/developmental disabilities and their parents and teachers to understand their experiences providing a peer mentoring mental health intervention. RESULTS: Young adult peer mentors perceived themselves as responsible for maintaining the mentoring relationship, delivering the intervention and acting as helpers and independent professionals. The experiences of young adult peer mentors were driven by the temporal, institutional and social contexts of their work. Peer mentoring was an enjoyable, social activity. Mentors, parents and teachers emphasised how taking on the peer mentoring role during the transition to adulthood and within the capital-rich university context led to a sense of pride and professional development. Further, these contexts may have led mentors to emphasise their intervention-delivery, helper and professional roles over relationship maintenance. DISCUSSION & CONCLUSION: Context may shape the perceived roles and benefits for young adult peer mentors with intellectual/developmental disabilities.

Anticipating the outcomes: how young adults with developmental disabilities and co-occurring mental health conditions make decisions about disclosure of their mental health conditions at work.

PURPOSE: Little is known about how young adults (YA) with developmental disabilities (DD) and co-occurring mental health conditions navigate workplace disclosure of their mental health condition(s). We sought to understand the guidance professionals provide regarding disclosure and the decisions YA makes about disclosure of mental health conditions. METHODS: We conducted focus groups with professionals who support YA with DD to attain and maintain employment (n = 17) and individual interviews with YA with DD and co-occurring mental health conditions (n = 12; DD diagnoses: autism, n = 9, other DD, n = 3). We conducted content analysis to identify why, when, what, and to whom YA disclose their mental health condition and guidance provided regarding disclosure. RESULTS: YA and professionals described disclosure decisions as largely influenced by perceived needs (i.e., need for accommodations) and anticipated positive (e.g., support) and negative (e.g., stigma, not being hired) outcomes. They largely constrained disclosure to work-relevant content. Many YA disclosed to coworkers with whom they were comfortable, though both YA and professionals agreed that initial disclosure should be limited to supervisors and/or human resources. CONCLUSIONS: Workplaces may support disclosure-a necessity for the provision of accommodations-by cultivating an inclusive environment and openly demonstrating familiarity and comfort with employees with disabilities.IMPLICATIONS FOR REHABILITATIONProfessionals who support young adults with developmental disabilities and co-occurring mental health conditions should be well-versed in current laws and regulations on disclosure and reasonable workplace accommodations.Workplace culture is one major factor impacting how disclosure is handled, including whether the disclosure is required at all.Individuals with disabilities and professionals should recognize that timing, content, and decisions to disclose may vary by individuals' needs and workplace supports, and that change may occur over time.

Psychometric testing of the Icelandic Occupational Self-Assessment (OSA-IS).

BACKGROUND: The Occupational Self-Assessment (OSA) is a self-report measure of occupational competence and values used to identify goals and assess outcomes. The Icelandic version of the OSA (OSA-IS) has been through several developmental stages to evaluate its psychometric properties. Through each stage, revisions have been made. AIM: To investigate the psychometric properties of the fourth revised version of OSA-IS. MATERIALS AND METHODS: Retrospective data from 291 rehabilitation clients with a range of conditions were analysed using Rasch analysis of unidimensionality and descriptive statistics. All statistics were compared to established criteria. RESULTS: Analyses suggest the OSA-IS items define unidimensional constructs of occupational competence and values. Most (89%) participants completed the assessment in a reliable manner and no association was observed between demographic variables and fit status. Differences in the item hierarchies were observed between the original OSA and the OSA-IS, suggesting that Icelandic clients responded differently due to cultural, linguistic and/or sample differences. CONCLUSION AND SIGNIFICANCE: OSA-IS is a psychometrically sound instrument that may be used to support identification of client-centred goals and for intervention development. Clinicians should use score tables specifically developed for the OSA-IS to measure outcomes.

Eligibility criteria in NIH-funded clinical trials: Can adults with intellectual disability get in?

BACKGROUND: Although scientific breakthroughs can promote health equity, there is concern that adults with intellectual disability, a health disparities population, may be excluded from clinical trials. OBJECTIVE: To determine the extent to which adults with intellectual disability are subject to exclusion from National Institutes of Health (NIH)-funded clinical trials. METHODS: We studied recent NIH-funded Phase 2/3, 3, and 4 clinical trials of United States-based working-age adults (>18 < 55 years of age) listed in ClinicalTrials.gov. We coded eligibility criteria for inclusion, direct exclusion, and indirect exclusion of adults with intellectual disability. RESULTS: We rarely identified studies that directly include adults with intellectual disability. Most studies (74.6%) had eligibility criteria that directly and/or indirectly exclude adults with intellectual disability. Approximately one-third of studies had direct exclusion criteria based on cognitive impairment or diagnosis of intellectual disability. Nearly 65% of studies indirectly excluded adults with intellectual disability based on factors likely associated with intellectual disability (e.g., functional capacity, inability to read/write, and/or research staff discretion). CONCLUSIONS: We found less exclusion based on diagnosis of intellectual disability than anticipated. Nonetheless, about three-fourths of studies had eligibility criteria which would likely lead to the direct and/or indirect exclusion of adults with intellectual disability. Our findings suggest substantial cause for concern that adults with intellectual disability experience widespread exclusion from NIH-funded clinical trials-exclusion that may lack appropriate justification and assessment. Consequently, this group is denied equal access to the potential benefits of scientific discovery. We provide recommendations for approaches to include adults with intellectual disability.

How people with intellectual and developmental disabilities on collaborative research teams use technology: A rapid scoping review.

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.

Predictors of community-based employment for young adults with intellectual disability and co-occurring mental health conditions.

PURPOSE: To identify predictors of community-based employment and employment quality for young adults ages 23-30 with intellectual disability and co-occurring mental health conditions (YA-ID-MH). METHODS: We conducted secondary analysis of the 2017-2018 National Core Indicators® (NCI®) In-Person Survey. The NCI® survey was conducted in 35 states and Washington DC. Participants: YA with ID, ages 23-30 who had complete data. We conducted multiple regression analyses to examine demographic and environmental predictors of community-based employment, in addition to employment quality indicators: hourly wages, hours worked, and job duration. We also descriptively examined job satisfaction. RESULTS: YA-ID-MH were somewhat less likely to be employed per record review and self-report than YA with ID only, but these findings did not reach statistical significance. On average, YA with ID only had higher hourly wages and worked more hours than those with ID-MH, but there were no significant differences in job duration. For YA-ID-MH, predictors of employment included gender, race, level of ID, and residential setting. Multiple demographic and environmental factors predicted employment quality. CONCLUSIONS: YA-ID-MH experience employment disparities compared to YA with ID only. Service providers should specifically attend to those at the highest risk of unemployment/low quality employment.IMPLICATIONS FOR REHABILITATIONYoung adults with intellectual/developmental disabilities and co-occurring mental health conditions (ID-MH) experience employment disparities.Young adults with ID-MH who are non-white and female may have particularly low employment rates and employment quality.Societal-level interventions to address racial and gender-based bias may support individuals with ID-MH to acquire and maintain jobs by addressing disparities in social networks/social capital and ensuring equitable service provision and supports for those at the highest risk for unemployment.Policy makers should consider additional funding for employment services for transition-age youth with ID-MH, particularly those from marginalized populations.

Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities.

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.

Impact of COVID-19 on services for people with disabilities and chronic health conditions.

BACKGROUND: People with disabilities and chronic health conditions rely on a range of services and supports to complete daily tasks, maintain health, and participate in the community. Preliminary research suggests the COVID-19 pandemic greatly disrupted these services and this population may be particularly susceptible to unemployment. OBJECTIVE: Describe employment and service disruptions for individuals with disabilities and chronic health conditions during the onset of community-based spread of COVID-19 in the United States. METHODS: Adults with disabilities and chronic health conditions completed online surveys to report employment and service changes via multiple choice and open-ended questions. Multiple choice questions were analyzed using descriptive statistics; open-ended responses were coded using content analysis. RESULTS: Participants (n = 109): 79.8% female, 88.1% white, 77.121% completed a 4-year college degree or greater, 61.4% had annual income ≥$45,000. Only 14.9% of survey respondents reported disruptions in employment. On average, 54.0% of service changes were due to discontinuation, including loss of physical therapy, job coaching, community organizations, transportation, and peer supports. Other changes included a shift to virtual service delivery and family members taking the role of service providers. CONCLUSIONS: Individuals with chronic health conditions and disabilities experienced service disruptions, even in a sample with considerably more economic, social, and educational privilege than the general population of people with chronic health conditions and disabilities in the United States.

Adoption of patient-reported outcome measures with youth with intellectual/developmental disabilities: Contextual influences and practice patterns.

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.

Usability and Reliability of an Accessible Patient-Reported Outcome Measure (PROM) Software: The Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO).

IMPORTANCE: Patient-reported outcome measures (PROMs) are used in rehabilitation to evaluate outcomes. We integrated a new PROM for transition-age youth with intellectual and/or developmental disabilities (IDD), the Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO), with a computer-delivered survey platform (Accessible Testing Learning and Assessment System) to enhance cognitive accessibility. OBJECTIVE: To evaluate the usability of the PEDI-PRO software and to investigate its reliability and acceptability to transition-age youth with IDD. DESIGN: Clinical field testing and a survey; repeated-observation test-retest design. SETTING: Clinicians evaluated the PEDI-PRO's usability in school and health care contexts; research staff conducted reliability and acceptability testing in natural settings. PARTICIPANTS: Occupational therapists (n = 12) and physical therapists (n = 2) administered the PEDI-PRO to 39 youths with IDD. Fifty-five transition-age youth with IDD (M age = 19.7) completed the PEDI-PRO twice. OUTCOMES AND MEASURES: Clinicians completed the System Usability Survey (SUS) and open-ended feedback. Youth provided feedback via a brief survey. RESULTS: The mean SUS rating was 84.00 (SD = 11.68), exceeding the industry standard. Intraclass correlations ranged from .80 to .83 across the three PEDI-PRO domains. Internal reliability (α) was .86-.90 across domains. Youth reported that they liked the accessibility features: interface images, button sounds, read-aloud audio, and rating category choices (M = 88.8%, SD = 5.1%). CONCLUSIONS AND RELEVANCE: The PEDI-PRO supported transition-age youth with IDD to reliably report perceived functional performance. The accessible software was favorably perceived by both clinicians and youth. WHAT THIS ARTICLE ADDS: Design features of the PEDI-PRO make it easy to use in practice with transition-age youth with IDD. The PEDI-PRO's cognitively accessible administrative design, including step-by-step instructions for teaching PROM use and a self-reflective questioning technique, could serve as a training model for this and other PROMs.

Stakeholder-driven approach to developing a peer-mentoring intervention for young adults with intellectual/developmental disabilities and co-occurring mental health conditions.

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.

"That Felt Like Real Engagement": Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability.

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.

Youth's Perspective of Responsibility: Exploration of a Construct for Measurement with Youth with Developmental Disabilities.

AIMS: There is a need to develop self-reports that measure youth's responsibility for major life tasks. We examined if the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test's (PEDI-CAT) operationalization of responsibility is salient to youth with developmental disabilities (DD). The PEDI-CAT defines responsibility as, "the extent to which the young person…take[s] control over organizing and managing major life tasks." METHODS: During six focus groups (n = 43), youth generated examples of behaviors and actions that demonstrated responsibility. Data were coded as "responsibility" or "discrete skills" per PEDI-CAT definitions. We reviewed examples in both categories and compared and contrasted how youth described responsibility. RESULTS: Youth's descriptions of responsibility aligned with the PEDI-CAT's responsibility construct 42.75% of the time. In these instances, youth perceived themselves as causal agents who had to make decisions and self-regulate to manage and organize major life tasks. Otherwise, youth described themselves as causal agents who adhered to rules, social norms, and expectations of others during the execution of discrete skills. CONCLUSIONS: Youth perceive themselves as responsible, causal agents during both the coordination and management of major life tasks and during the execution of discrete skills. As this is not aligned with the PEDI-CAT's operationalization of responsibility, there is a need to further explore youth's perceptions of responsibility prior to developing a self-report.

Development of the Pediatric Disability Inventory-Patient Reported Outcome (PEDI-PRO) measurement conceptual framework and item candidates.

BACKGROUND: To address the gap in patient reported outcome measures (PROMs) of functional performance appropriate for youth and young adults with developmental disabilities (DD) we developed the Pediatric Evaluation of Disability Inventory-Patient Reported Outcome (PEDI-PRO). AIM/OBJECTIVE: We used a participatory process to: (1) Develop the measurement conceptual framework; (2) Identify discrete functional tasks to include in the PEDI-PRO; and (3) Refine item candidates. METHODS: We collaborated with eight youth with DD over 33 months. These youth and university researchers explored the construct of functional performance, developed and refined items, and collected and analyzed data. We also conducted focus groups with youth with DD (n = 62) and rehabilitation professionals (n = 26), and consulted with PEDI measurement experts (n = 3). RESULTS: Youth's understanding of their functional performance is embedded in their experiences participating in everyday life situations. We developed 78 Daily Activities, 65 Social/Cognitive, and 52 Mobility item candidates that are linked to 11 everyday life situations to assess discrete functional tasks important to youth with DD and rehabilitation professionals. CONCLUSION AND IMPLICATIONS: As a result of our participatory development process, the PEDI-PRO's proposed conceptual framework and item candidates are grounded in the lived experience of youth with DD.

Initial evaluation of the effects of an environmental-focused problem-solving intervention for transition-age young people with developmental disabilities: Project TEAM.

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.

"I just had to be flexible and show good patience": management of interactional approaches to enact mentoring roles by peer mentors with developmental disabilities.

PURPOSE: Peer mentoring may be an effective approach for fostering skill development for mentors and mentees with developmental disabilities. However, little is known about how mentors with developmental disabilities perceive and enact their roles. RESEARCH QUESTIONS: (1) How do young adults with developmental disabilities describe their role as a peer mentor in the context of instrumental peer mentoring? (2) How do they enact their perceived roles? METHODS: Thematic analysis of semi-structured reflections completed by six mentors with developmental disabilities (ages 17-35) with multiple mentoring experiences. RESULTS: Mentors perceived themselves as professionals with a primary role of teaching, and for some mentoring relationships, a secondary role of developing an interpersonal relationship. To enact these roles, mentors used a supportive interactional approach characterized by actions such as encouragement and sharing examples and dispositions, such as flexibility and patience. Mentors monitored mentee learning and engagement within the mentoring session and, as needed, adjusted their approach to optimize mentee learning and engagement. To successfully manage their interactional approach, mentors used supports such as peer mentoring scripts, tip sheets, and supervisors. CONCLUSIONS: While mentors reported several actions for teaching, they may benefit from training to learn approaches to facilitate more consistent development of interpersonal relationships. Implications for Rehabilitation Peer mentoring may be an effective approach for fostering skill development for young adult mentors and mentees with developmental disabilities. In this study, young adult peer mentors with developmental disabilities perceived themselves as professionals with a primary role of teaching and a secondary role of developing an interpersonal relationship. Peer mentors used actions and dispositions that matched their perceived roles and supported mentees with developmental disabilities to engage in instrumental mentoring. With supports and training, young adults with developmental disabilities can successfully execute the complex relational and teaching tasks required of peer mentoring.

Patient-reported outcome measures for young people with developmental disabilities: incorporation of design features to reduce cognitive demands.

Use of patient-reported outcome measures (PROMs) may increase the involvement of young people with developmental disabilities in their healthcare decisions and healthcare-related research. Young people with developmental disabilities may have difficulty completing PROMs because of extraneous assessment demands that require additional cognitive processes. However, PROM design features may mitigate the impact of these demands. We identified and evaluated six pediatric PROMs of self-care and domestic life tasks for the incorporation of suggested design features that can reduce cognitive demands. PROMs incorporated an average of 6 out of 11 content, 7 out of 14 layout, and 2 out of 9 administration features. This critical review identified two primary gaps in PROM design: (1) examples and visuals were not optimized to reduce cognitive demands; and (2) administration features that support young people's motivation and self-efficacy and reduce frustration were underutilized. Because assessment demands impact the validity of PROMs, clinicians should prospectively consider the impact of these demands when selecting PROMs and interpreting scores. WHAT THIS PAPER ADDS: Patient-reported outcome measure (PROM) design features can reduce assessment demands related to cognitive processes. Pediatric PROMs underutilize design features that decrease cognitive demands of self-reporting.