Evaluating long-standing community-based programs like Special Olympics (SO) presents unique challenges, particularly when assessing long-term health outcomes for individuals with intellectual disability (ID). This article describes the development of Project ALL STAR (Active Life and Longevity: Special Olympics Transforming Athlete Results), a longitudinal evaluation designed to measure the physical, mental, and social-emotional health impacts of SO participation. Led by Special Olympics International, in collaboration with academic researchers and adults with ID, the planning process emphasized inclusive and community-engaged methods. Key challenges included navigating SO's federated infrastructure, addressing variability in program delivery, building evaluation capacity, and balancing scientific rigor with practical feasibility. Advisory boards composed of athletes and researchers guided the selection of outcome measures and ensured relevance and accessibility. Project ALL STAR reframes SO as a community-based public health intervention and serves as a model for evaluating large-scale, community-based programs. This article offers practical guidance by sharing lessons learned from developing a scalable, inclusive, community-engaged longitudinal evaluation framework to improve health outcomes among people with ID.
The aim of this study was to evaluate the data collected using the French version of the Diagnostic Adaptive Behavior Scale (DABS-F) during the main field test of the adaptation project, from an approach based on the item response theory. Six hundred and eighty-six participants with typical development and 199 participants with intellectual disability were recruited across three European French-speaking countries (Belgium, France, and Switzerland). The data were analyzed replicating the analyses of the original developers of the DABS. Results showed that unidimensionality, link-items, discrimination, and difficulty parameters arising from the IRT analyses, as well as discriminant validity of the DABS-F, were all comparable with the results obtained using the original version of the instrument. These results were discussed in relation to the whole adaptation project of the DABS-F.
People with intellectual disability (ID) are living longer lives than in generations past, and experience aging-related health issues, like Alzheimer's disease and related dementia (ADRD). Our objective was to document prevalence and age of diagnosis of ADRD in the population with ID (excluding Down syndrome) ≥30 years old in the United States from 2011 to 2022 enrolled in Medicaid and/or Medicare. We measured ADRD and ID using International Classification of Disease-9/10 claims algorithms and examined demographics and trends in ADRD. We examined age at incident ADRD diagnosis. Among 1,046,621 adults with ID ≥30 years old enrolled in Medicaid and/or Medicare between 2011 and 2022, 184,206 (17.6%) had claims for ADRD, corresponding to an 11-year prevalence of one case per 5.7 people. Yearly prevalence was lowest in 2011 (11.3%) and highest in 2019 (16.7%). There were few differences in prevalence for each age group between sexes, races, and ethnic group. Mean age at onset was 62.6 years (13.1 = SD). ADRD is common in people with ID and individuals, clinicians, and families should be prepared as individuals and populations age. As a heterogenous and often idiopathic group of conditions, further research is warranted to understand biologic and social risk factors for ADRD in this population.
This study evaluates the feasibility, acceptability, and preliminary outcomes of the Research Units in Behavioral Intervention (RUBI) Parent Training program in an adapted group format within a community-based clinical setting. Caregivers of children aged 3 to 12 years with autism spectrum disorder or other developmental disabilities (DD) participated in 10- or 12-week RUBI groups. Data from 141 participants were retrospectively analyzed using electronic health records and standardized caregiver-reported measures. Results indicated moderate attendance (71.8% session attendance), with disparities observed by insurance type and race. Significant improvements were found in child emotional dysregulation and caregiver stress, while noncompliant behaviors showed no significant change. Outcomes were consistent for youth with autism and youth with other DD. Caregiver satisfaction was high, with 94% reporting perceived behavioral improvement and 100% recommending the program. This is the first known study to evaluate RUBI in a heterogeneous developmental population beyond autism. Findings support the feasibility and effectiveness of RUBI in a group format for diverse developmental populations, although attendance differences and cultural responsiveness warrant further investigation.
Down syndrome (DS) is the most common intellectual disability genetic syndrome and presents a distinct linguistic profile. The present study aims to investigate the production of relative clauses (RCs) in 30 Greek-speaking individuals with DS (24.28 years old) and compare it to that of 40 typically developing (TD) children matched (a) for mental age (n = 20, 5.95 years old) and (b) for linguistic abilities (n = 20, 4.16 years old). Using an elicited production task, the groups were assessed for their total performance in the task, the proportion of incorrect responses in subject and object RCs, and the total number of grammatical errors produced. The results indicated that individuals with DS performed worse compared to TD children producing significantly more morphosyntactic errors.
