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.
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.
As a potential indicator of social competence, the present study longitudinally examined resting state heart rate variability, measured as respiratory sinus arrythmia (RSA), at two time points in young children with autism (AU), children with intellectual disability without AU (ID), and typically developing children (TD). Participants were 29- to 81-month-old children. We replicated previous findings of lower resting state RSA in children with AU as compared to TD children. We further advanced the current knowledge by demonstrating that children with AU also exhibited lower resting state RSA compared to I children with ID. In children with AU and ID, the resting state RSA correlated with restricted, repetitive and stereotyped behavior, but the direction of the correlation was reversed between the groups. These findings indicate that lowered variability in resting state heart rate could be specific to autism in early development.
Latinx families of children with disabilities are at disproportionally high risk of adverse health outcomes, including overweight, obesity, and depression. Research on specific social determinants and sociocultural factors that impact their health remains limited. In this study, we examined how social determinants of health (SDOH) and sociocultural contexts are related to maternal health outcomes in a sample of 105 Latina mothers of children with intellectual and developmental disabilities (IDD) in the United States. Mothers were interviewed by phone or video conference call and were asked about maternal and child demographics, maternal chronic health conditions, SDOH indicators, and sociocultural factors (family cohesion and social support). Conditional process models were conducted for the maternal health outcomes measured by body mass index (BMI) and depressive symptoms. High levels of overweight, obesity, and depressive symptoms were observed among these mothers. SDOH related to BMI and/or depressive symptoms included annual household income, home ownership, neighborhood safety, and perceived discrimination. Family cohesion and social support were related to lower depressive symptoms but were not associated with BMI. The study findings emphasize the importance of considering SDOH when developing support programs for Latina mothers of children with IDD.
Physical restraints (PR) are commonly used in people with intellectual disability (ID). Their use is often associated with negative psychological and health outcomes, but their benefits are unclear. We aimed to provide a systematic and comprehensive overview of the available body of evidence on this topic. This scoping review includes studies on PR use in people with ID in the community and residential settings. Forty-two studies were included in the final analysis; 37 quantitative studies (23 noninterventional and 14 interventional) and 5 qualitative studies, mainly from the United Kingdom and United States. The definitions of PR varied. The studies investigated prevalences, factors associated with PR use, interventions for reducing PR use or behavior that challenges, and experiences with PR use. None of the studies used a participatory design. To improve the comparability of the available evidence, a consensus definition of PR and associated concepts in people with ID is needed. There should also be more emphasis on involving people with ID in health research.
Tubulinopathies are rare genetic conditions resulting from alterations to genes that encode tubulin proteins. Advances in genetic testing are leading to an increasing number of individuals with tubulinopathy diagnoses, but relatively little prognostic information is available to inform intervention and education planning. The present study aimed to address this gap by analyzing caregiver Developmental Profile Scales-4 ratings for 32 individuals with a confirmed tubulinopathy involving either the TUBA1A, TUBB2A, TUBB2B, or TUBB3 genes. Group-level challenges were observed across all domains evaluated, and motor skills were most severely affected. Individuals with TUBB3 conditions demonstrated relatively milder degrees of delay, and those with cooccurring vision impairments (71%) showed greater overall delays than those without. Implications for future research and treatment recommendations are discussed.
This study aimed to examine: (a) behavioral and emotional problem trajectories of children (in middle and late childhood) and adolescents with intellectual disability, and (b) the influence of parenting behaviors and the parent-child relationship on these trajectories. Participants were primary caregivers (N = 350) of children/adolescents with intellectual disability who were 10 years or older in Wave 1, 2, or 3 and under 16 years by Wave 3 of a longitudinal families study. Measures of child behavioral and emotional problems, parenting behavior, the parent-child relationship, and parent psychological distress were included. Using linear mixed modeling, behavioral and emotional problems declined slightly over time but remained high. Parenting behaviors and parent psychological distress did not affect trajectories. However, conflict (but not closeness) in the parent-child relationship was associated with increased behavioral and emotional problems over time. Higher levels of family financial hardship and an autism diagnosis were associated with increased behavioral and emotional problems. Child sex differences were also identified. Despite small improvements, individuals with intellectual disability exhibit high levels of behavioral and emotional problems into and during adolescence. Parent-child conflict may be an important focal point for interventions to reduce behavioral and emotional problems in young people with intellectual disability.
Cooccurring congenital heart defects (CHDs) affect roughly 40% to 58% of infants with Down syndrome (DS). However, evidence on the variation and timing by which CHDs affect neurodevelopmental outcomes, including cognition, motor, and language abilities in DS is limited. The present study investigated effects of CHD on these neurodevelopmental outcomes from 12 to 24 months in N = 47 children with DS (n = 26 with cooccurring CHD). No significant developmental differences were found between infants with DS only and infants with DS+CHD at 12 months. Unexpectedly, children with DS+CHD showed significantly higher expressive language abilities at 24 months compared to children with DS only. Post-hoc analyses investigated possible buffering effects of therapy type and dose across ages, identifying different patterns across groups. Findings highlight the variation in developmental outcomes for children with DS+CHD broadly, and implications for targeted treatment for all children with DS are discussed.
Rett syndrome (RTT) is a postnatal neurological disorder caused by loss-of-function mutations in the gene that encodes methyl-CpG binding protein 2. RTT is characterized by initially normal development, followed by developmental regression at 6 to 18 months of age. Individuals with RTT subsequently develop motor deficits, impaired learning and memory, and breathing abnormalities. In this review, we summarize recent findings on how neuronal circuitry is impaired in RTT and how deep brain stimulation and presymptomatic, task-specific training significantly improve learning and memory in RTT mice. Translating these findings to clinical applications, interventional studies have shown initial evidence that structured behavioral exercises can benefit individuals with RTT. Based on the converging evidence from preclinical and clinical research, we advocate for early-stage intensive behavioral training to supplement other therapeutic approaches and enhance treatment outcomes.
The Washington Group Short Set on Functioning (WG-SS) allows for the identification of functional limitations across severity levels. Incorporating the WG-SS into Special Olympics (SO) surveys serves to understand functional support needs and inform SO programming for people with intellectual disability. This study examined functioning using both a restrictive and a broad definition of limitation among 525 U.S. SO athletes who completed an online survey in 2022. Self- and proxy-reported outcomes were compared to National Health Interview Survey (NHIS) estimates. Nearly a quarter of SO athletes (24.2%) reported any functional limitation under the restricted definition, while over three quarters (82.1%) reported limitations under the broad definition. Differences emerged between self- and proxy-reported data. Compared with NHIS age-adjusted estimates, SO athletes had higher prevalence ratios across all six domains, including self-care (PR = 12.93) and communication (PR = 11.21). These findings underscore functional diversity among SO athletes and inform programming and disability surveillance.
This study examined demographics, social determinants of health, comorbidities, and outcomes (mortality and readmissions) of hospitalized patients with intellectual and developmental disabilities (IDD). The sample included 39,256 hospital admissions for adult inpatients with IDD from four states. Logistic regression analyzed factors influencing 30-day readmission and in-hospital mortality. Results showed a 17.5% 30-day readmission rate. Black race, Medicare/Medicaid insurance, and admission from another facility were associated with higher odds of readmission. Age, Medicare insurance, and admission from emergency rooms, another hospital, or facility were associated with higher odds of in-hospital mortality. The study highlights the complex interplay of factors affecting outcomes for patients with IDD, emphasizing the need for targeted interventions and improved hospital care to address health disparities in this population.
Although early mathematical competencies are crucial for students with intellectual disability (ID), little is known about their cognitive predictors in this population. This study investigates the relationship between early mathematical competencies and intelligence, working memory (WM), as well as years of schooling. In a cross-sectional design, 76 primary school students were assessed using tests for quantity-number competencies, intelligence, and WM. Correlations and quantile regression analyses were conducted. Fluid intelligence showed a stable positive effect across all achievement levels, whereas visual-spatial WM had a particularly strong effect in lower-performing students. The results suggest that cognitive factors, particularly fluid intelligence and visual-spatial WM, play a central role in the development of mathematical competencies in students with ID.
Adaptive behavior is an essential criterion in defining intellectual disability. All three major diagnostic systems (American Association on Intellectual and Developmental Disabilities [AAIDD], Diagnostic and Statistical Manual of Mental Disorders [5th ed. text revision], and International Classification of Diseases [11th ed.]) conceptualize adaptive behavior as consisting of three domains: conceptual, social, and practical skills. Few of the existing standardized adaptive behavior measures were constructed using this tripartite conceptual model of adaptive behavior. The Diagnostic Adaptive Behavior Scale (DABS) was developed and validated using this tripartite model of adaptive behavior. This article summarizes the results of a confirmatory factor analysis that confirmed the tripartite model of the DABS and provided support that the DABS is a reliable measure to assess conceptual, social, and practical adaptive skills. The estimated internal consistency for the conceptual, social, and practical skill domains assessed on the DABS ranged from .97 to .99, indicating excellent levels of reliability.
Fragile X syndrome (FXS) is a rare condition that can require lifelong specialized care for optimal management. We describe census-based characteristics of general U.S. populations defined by proximity to FXS specialty clinics to better understand potential barriers to access. We used Geographic Information System software to estimate drive times from U.S. census tract centroids to FXS clinics. Of the contiguous U.S. population, 36.4% lives ≤1 hour from the closest FXS clinic in the same state; 32.4% live >1 to 4 hours, 7.3% live >4 hours, and 23.8% have no FXS clinic in their state. Individuals residing >1 hr from or in a state without an FXS clinic, compared to <1 hr, were more commonly non-Hispanic White, had household income below 150% poverty level, had one or more disabilities, and lived in a household without an internet subscription. Populations living ≤1 hr from an FXS clinic more commonly spoke limited English, lived in multiunit housing, and did not have a vehicle. These results can be used to identify areas of higher need for improving access to specialty care, inform efforts to reduce disparities related to access, and facilitate more optimal healthcare for people with FXS.
Increased life expectancy among people with intellectual disability has led to a growing prevalence of dementia, highlighting the need to understand how quality of life is experienced during its early stages. This qualitative study explored perceived quality of life among adults with mild to moderate intellectual disability and mild dementia residing in long-term care facilities in Chile. Semi-structured interviews were conducted with 86 individuals, using accessible communication strategies and visual supports. Data were analyzed using reflexive thematic analysis, informed by Schalock and Verdugo's quality of life framework. Five interrelated themes described how quality of life was experienced through the organization of activities and environments, emotional and physical experiences, relationships and participation, involvement in decision-making and support, and perceived changes over time. Quality of life in early-stage dementia was articulated through concrete experiences of participation, relationships, and support, underscoring the importance of everyday contexts as key sites where well-being is experienced and sustained.
The NIH Toolbox Cognition Battery (NIHTB-CB) assesses crystallized verbal skills,and shows strong psychometric properties and sensitivity to developmental change in intellectual and developmental disabilities. However, whether gains in NIHTB-CB Crystallized Cognition reflect improvements in broader verbal abilities is unclear, and this has implications for clinical interpretation of the measure in the context of treatment studies. Two-hundred sixty-three participants completed NIHTB-CB Crystalized Cognition subtests (Picture Vocabulary, Oral Reading Recognition) and Stanford-Binet 5th ed. subtests (Verbal Knowledge, Verbal Fluid Reasoning) at baseline and at two-year follow-up. Bivariate latent change score models examined whether changes in Crystalized Cognition were related to changes in broader verbal skills. Changes in Crystalized Cognition were significantly related to changes in Verbal Knowledge (β = 7.92, p = .009) and Verbal Fluid Reasoning (β = 4.91, p = .018). Higher baseline Crystalized Cognition predicted greater improvement in these verbal domains, while higher initial verbal scores also predicted more Crystalized Cognition growth. Change in the NIHTB-CB Crystalized Composite was significantly related to growth in verbal reasoning in children and young adults with IDD. This may indicate that the Crystalized Composite is a useful proxy for broader verbal skills, underscoring its clinical relevance.
Few studies examine the impacts of structural inequities on service access and use for people with intellectual and developmental disabilities (IDD). This secondary data analysis used data from the Medical Expenditure Panel Survey and the American Community Survey to examine the association of race, neighborhood segregation, and hospital and outpatient use among people with IDD. Our sample included children and adults with a diagnosis of IDD. Multilevel logistic regression models with random intercepts were used to assess the association between race, neighborhood segregation, and emergency room (ER), hospital, and any outpatient use. Our analyses adjusted for individual-level predisposing, enabling, and need characteristics. Ninety-four percent of the sample reported use of outpatient services, 15% had at least one ER visit, and 5% had at least one hospitalization. Living in a segregated neighborhood was associated with lower odds of any outpatient use (OR = 0.35, 95% CI: 0.15-0.85). We found no evidence of association between neighborhood segregation and hospital or ER use. Other (vs. White) race was associated with lower odds of any outpatient use (OR = 0.33, CI: 0.12-0.90) and higher odds of hospital use (OR = 8.00, CI: 2.26-28.35). Scholars need larger integrated datasets and more nuanced methods for longitudinal analyses to map associations better between race, neighborhood segregation, and their impact on service use.
Latino children with intellectual and developmental disabilities (IDD) face disparities in accessing specialty services. Using 2020-2023 National Survey of Children's Health data (N = 2,497), we conducted logistic regressions to examine how parental nativity and household language affect specialty services use among Latino children with IDD. While children of immigrant parents had lower odds of service use, this association was explained by household language. Children in Spanish-speaking households were significantly less likely to receive services (OR = 0.53, CI = 0.33-0.84). The mediation analysis further highlights that language, more than nativity, drives disparities. Therefore, efforts to improve access should include Spanish-speaking providers and culturally responsive care.
