Self-determination (SD) of young adults with intellectual disability (ID) is necessary to their success beyond high school, but our understanding of the construct of SD does not sufficiently invoke environmental factors or context. We explore employment-related SD of young adults with ID using psychometric methods. This cross-sectional study examines the construct validity and internal consistency of the Vocational Fit Assessment (VFA)-SD (n = 309), then concurrent validity of the VFA-SD with the Self-Determination Inventory: Parent/Teacher Report (SDI-PTR; n = 233). Ordinal exploratory factor analysis strongly suggests that VFA-SD items measure one unidimensional construct. The mean inter-item correlation was 0.61, ordinal α = 0.97, and McDonald's ω = 0.87. The VFA-SD and the SDI-PTR were positively and moderately correlated, R = 0.61, p < .001. Taken together, these complementary psychometric results validate the use of the VFA-SD but also indicate potential benefits of item refinement and the opportunity to align with widely accepted Causal Agency Theory. This work highlights the critical need for all transition professionals to consider the context when selecting appropriate assessments to measure young adults' SD, as well as the need for future research that considers employment as a relevant contextual factor.
This study examines whether the autonomy of workers with intellectual disability (ID) mediates the relationship between inclusive leadership by supervisors within a business and coworkers' attitudes toward hiring workers with ID. Data were collected from 113 employees without ID across six industries (hotels, public administration, agriculture, construction, social services, and other services) in Spain who worked daily with a coworker with ID. Using a cross-lagged design, inclusive leadership was measured at time one, while autonomy and attitudes were assessed at time one and four consecutive working days later for the focal worker with ID (time two). Mediation was tested using regression-based path analysis with bootstrapped confidence intervals for the indirect effects. Results indicated that autonomy at time two fully mediated the relationship between inclusive leadership at time one and coworkers' attitudes at time two, controlling for baseline autonomy and attitudes. Inclusive leadership was positively associated with autonomy in workers with ID, which in turn was positively related to more positive hiring attitudes toward workers with ID. These findings underscore autonomy as a mediator linking inclusive leadership to attitudes in non-ID coworkers.
Self-determination of individuals with intellectual disability (ID) remains an important yet still underexplored area, particularly in relation to institutional support and the role of caregivers in fostering the autonomy of young adults. This study examined the institutional conditions that create opportunities for exercising self-determination in young adults with ID, with particular attention to the role of institutional caregivers. In this study, institutional caregivers are understood as trained professionals-such as social workers, special education teachers, therapists, and support staff-who provide formal support in day-care centers, supported living facilities, community homes, and other institutions offering social assistance and social integration services within the Polish social support system. Semi-structured interviews were conducted with fifteen institutional caregivers of young adults with ID. The transcripts were analyzed using grounded theory procedures. Three key themes emerged: caregivers' personal judgments regarding the promotion of self-determination in individuals with ID; the dynamics between parents and institutional caregivers shaped by their respective beliefs; and the role of caregivers in interactions between parents and their adult son or daughter. The findings highlight the complex and demanding role of institutional caregivers in supporting the self-determination of individuals with ID.
Adults with intellectual and developmental disabilities (AIDD) experience persistent barriers to accessing and participating in health care yet are rarely engaged as partners in efforts to improve accessibility. This study used the evidence-based Our Voice (OV) citizen science approach to engage AIDD in identifying barriers and facilitators to primary care access and generating actionable solutions. Twelve participants (six AIDD and six adults without IDD) documented accessibility conditions across three medical clinics using photographs and narratives. Analysis of 170 photographs and 154 narratives identified five themes: (1) sensory considerations, (2) informational materials, (3) signage and wayfinding, (4) accommodations, and (5) physical accessibility. Findings demonstrate the feasibility of engaging AIDD in structured, clinic-based accessibility assessment and suggest a participatory framework that may inform research and quality improvement initiatives aimed at promoting disability-inclusive health care.
This survey study examined how secondary traumatic stress (STS), emotional exhaustion (EE), and other personal and work-related factors of 406 direct support professionals (DSPs) affected job satisfaction and turnover intentions. Regression and structural equation modeling revealed that STS was positively related to EE that was negatively related to job satisfaction and positively related to turnover intentions, thus mediating the relationship between STS and these workplace outcomes. In addition, both resilience and perceived organizational support were positively and directly related to job satisfaction and perceived organizational support was indirectly through EE and directly related to turnover intentions. Findings highlight the need to address STS, the EE aspect of burnout, and organizational support to retain DSPs in high-stress social service roles.
Inclusive postsecondary education (IPSE) programs for students with disabilities have expanded nationwide, yet guidance for their evaluation remains limited. This article introduces Value on Investment (VOI) for IPSE programs as an evaluative orientation to support leaders and evaluators in rethinking how value is defined and examined. A VOI orientation moves beyond traditional outcome-focused or cost-benefit evaluation by attending to three interrelated dimensions of value: student-centered, institution-centered, and field/community/society-centered. VOI is a values-based evaluative stance that shapes which outcomes are prioritized, whose perspectives are centered, and how evidence of impact is interpreted over time. As an orientation rather than a discrete or prescriptive evaluation approach, VOI emphasizes strategic decision-making as a central function of evaluation, rather than the development of fixed metrics or endpoints. The paper further attends to the developmental nature of value identification in IPSE across stakeholders, highlighting the importance of aligning evaluation efforts with program maturity, student trajectories, and broader institutional change processes. Collectively, this evaluative stance complements existing evaluation practices by going beyond only what students may gain to what institutions become capable of sustaining.
Many parents of individuals with intellectual and developmental disabilities (IDD) experience high levels of stress. Such stress can negatively impact parents (e.g., create exhaustion, worsen physical and mental health) and their children with IDD (e.g., reduce their quality of care). By identifying specific stressors and their correlates, targeted interventions can be designed to mitigate stress and improve outcomes for families of adults with IDD. In this study, 518 parents of adult children with IDD responded to a national survey about their stress. Top stressors included future planning and a lack of daily activities for their adult children with IDD. Having an adult child with autism and being from collectivistic cultures were consistent correlates of greater stress. Implications for research, policy, and practice are discussed.
Despite the increased prevalence of autism among children of color, disparities in service access persist. Family-centered autism psychoeducational interventions have emerged to empower racially and ethnically marginalized caregivers of children with autism with knowledge and skills to improve child outcomes. This systematic content analysis explored the extent to which psychoeducational interventions for racially and ethnically marginalized families facilitate occupation, also known as activities of everyday life, through their service delivery. Eight studies met the inclusion criteria, representing four psychoeducational interventions. Findings indicated that, while occupation was not emphasized in these curricula, each intervention facilitated occupation. Our content analysis of the interventions highlights opportunities for occupational therapy and psychoeducation to collaborate to increase occupational engagement and improve health and well-being of Black and Latino children with autism and their families.
The shared citizenship paradigm envisions, requires, and supports the engagement and full participation of people with disabilities as equal, respected, valued, participating, and contributing members of all aspects of society. The goals of shared citizenship are to enhance human dignity and autonomy, facilitate human endeavor, and maximize human engagement. This article describes how the goals of shared citizenship can be supported through a greater focus on systemic changes in research, policy, and practice that seeks to advance change across ecological systems and align the goals and principles of the Shared Citizenship Paradigm with change strategies. The article concludes with a discussion of how supporting the goals of shared citizenship involves changing the lens through which disability is viewed, to enhance systemic change across ecological systems.
Training is often recommended to professionalize the role of employment consultants. However, adult learning theory suggests that applying what is learned in training can be challenging without reinforcement in the workflow. This article examines how integrating data and microlearning into employment consultants' workflows can support the implementation of best practices in supported and customized employment. Thirteen employment programs used a tool that visualized individual, team, and project-wide data on employment service delivery, accompanied by microlearning. Over the 12-month intervention, time dedicated to supports leading to hire increased by 9%, to community-based supports by 49%, and to specific best practices in getting to know job seekers and finding jobs by 12%. Meanwhile, time devoted to non-employment tasks decreased by 20% and administrative tasks by 11%. These promising findings suggest that embedding data and microlearning in the workflow may help strengthen professional practice and improve employment outcomes for job seekers.
This study examined the challenges encountered by caregivers of individuals with intellectual disability in a residential care home and their suggested solutions. A basic qualitative design within the interpretive paradigm was employed, using purposive sampling to recruit 21 caregivers. Thematic analysis revealed three overarching themes: disability-related challenges, care home-related challenges, and strategies to improve quality of life. Disability-related challenges involved behavioral issues, cognitive impairments, and difficulties in managing chronic conditions. Care home-related challenges included limitations in the physical environment and care management processes. Suggested improvements emphasized fostering social inclusion, enhancing support for individuals with disabilities, and upgrading the care environment. The findings highlight the dual impact of individual and environmental factors on caregiving and offer actionable strategies for improvement.
Although children with intellectual and developmental disabilities (IDD) more often experience mental health concerns, they do not always receive mental health services. This study examined the barrier of caregiver familiarity with services. Analyzing a statewide survey of 137 caregivers of children with IDD and mental health concerns, high percentages (35%-60%) were unfamiliar with common school-based child, community-based child, and (community-based) family mental health services. Especially concerning family services (e.g., family therapy, behavioral parent training, caregiver therapy), caregivers did not know what services to ask for or where to find them. Caregivers' service familiarity increased when children received a formal mental health diagnosis, but not when the child had an Individualized Education Program. Implications are discussed for research, policy, and practice.
This study uses 2019 national Medicaid data to examine Supplemental Security Income (SSI) recipients, focusing on working-aged beneficiaries with autism or intellectual disability (ID). Our findings reveal higher-than-average SSI participation among these groups, with a significant concentration of transition-aged recipients (18 to 25 years). Notably, outpatient psychiatric services were more commonly used by SSI recipients, despite overall similar service utilization between recipients and non-recipients. Automatic enrollment states have higher SSI participation compared to states requiring separate applications, particularly in those with more restrictive Medicaid eligibility criteria, suggesting that the absence of SSI recipients not enrolled in Medicaid from the data may bias results. These insights emphasize the need for targeted policy interventions to better address the unique needs of this population.
This study explored the romantic relationship perspectives and experiences of Chinese youth with intellectual and developmental disabilities (IDD) through semi-structured interviews with 18 participants. Analysis revealed three themes: conceptualizations of love and relationships; barriers and facilitators to relationship pursuit; and support systems for romantic aspirations. Findings suggest that participants possess complex understandings of romantic relationships, face multi-layered barriers including family attitudes and limited social opportunities, and benefit from both formal and informal supports. Results highlight the need for comprehensive relationship education and culturally responsive approaches that balance individual aspirations with Chinese family values.
Federal and state governments often jointly fund Medicaid Home and Community-Based Services waiver programs. Eligibility determination for services for individuals with an intellectual disability (ID) is often dependent on a state's specific definition of ID. Many states use intelligence quotient (IQ) scores as part of their eligibility determination process. We analyzed the use of IQ in these decisions across all 50 states and the District of Columbia. We found that 24 states do not rely on IQ for eligibility decisions, 19 states use IQ in some way, and eight states depend on a singular IQ score for eligibility determinations. This variability can lead to inequitable access to services for individuals with ID.
This study documents changes between 2012-13 and 2022-23 in the percentage of U.S. adults with intellectual disability (ID) using self-directed (SDF). We analyzed National Core Indicators SDF data from 22 states. Overall percentage prevalence grew from 11.6% to 17.1% but with much variation between states in prevalence and growth of SDF use. The increase was larger for family-home dwellers (21.8%-32.9%) than own-home residents (11.0%-15.4%). We found vastly higher growth in SDF use in these 22 states over the same decade for non-ID populations. Among people with ID, access to SDF was strongly related to state of residence and living arrangement. Robust growth and high prevalence of SDF use in certain states may provide models for other states to emulate.
Standards of privacy are required for people with intellectual and developmental disabilities (IDD) receiving Medicaid Home and Community-Based Services (HCBS). The National Core Indicators In-Person Survey is one tool that people with IDD use to assess the presence, absence, and quality of their privacy. This study describes privacy assessments from a sample of 2,196 service users with IDD from 2021-2023 and shows that patterns of missing assessments are predicted by level of intellectual disability and nonverbal forms of communication. Missing privacy data, especially from those at greatest risk, poses a threat to community integration for people with IDD and requires the development of more accessible methods for collecting personal outcome data.
Youth with developmental disabilities (DD) are often at increased suicide risk. However, clinician guidance on suicide prevention practices specific to the DD population is rarely available, which may result in care disparities. The current study examined whether rates of standard suicide risk screening in two pediatric emergency departments (ED) differed for youth with and without DD. Then, using data from a NIMH-funded initiative, we compared youth with and without DD on demographic, visit, and clinical characteristics to identify possible factors related to differences in screening rates. Disparities in the completion of suicide risk screening with youth with DD were identified in standard care but few differences were found across groups to suggest a rationale, holding important clinical and research implications.
Postsecondary outcomes for students with autism remain among the poorest across disability categories. This qualitative study used focus groups to explore the perspectives of 25 caregivers, special education teachers, and Pre-Employment Transition Service (Pre-ETS) providers to identify how transition teams can be strengthened to support students with autism. We identified three key findings: (1) transition planning is most effective when team members' complementary expertise is recognized and utilized, (2) both personal and systemic communication barriers hinder collaboration but can be addressed through intentional structures, and (3) trust develops through role clarity, consistent communication, and early shared successes. Findings highlight the need for school systems and agencies to provide structured role definitions, adaptive communication tools for team members, and support for relationship building.
People diagnosed with neurodevelopmental disorders (NDD) experience health disparities. To reduce disparities, healthcare students and professionals have repeatedly called for more training to help patients with NDD. To answer these calls, we developed time-efficient training to teach healthcare students and professionals to use evidence-based behavioral interventions during physical examinations to increase the comfort and cooperation of people with NDD. We hypothesized that the training would increase participants' confidence and competency in helping patients with NDD. Participants (n = 173) completed the training in less than 1.5 hr, reported increased confidence after the training, and demonstrated competency to use the interventions during testing. Our results support educators integrating this freely available, time-efficient training into healthcare education.
