The gestures produced by children with intellectual disability (ID) in spatial tasks are rarely considered, although they have a supporting role in the formation of thought. In this research study, we analyzed the number of gestures, the type of gestures, and their role in the expression of knowledge of students with ID. Twenty students (12-17 years old) with ID and 40 students with typical development (TD) matched on visual-spatial level (n = 20) and on language level (n = 20) participated in the research. Students with ID made significantly more gestures in relation to the number of words spoken compared to their peers with TD. Thirty percent of the expressive communication of students with ID came from gestures alone, and 60% of the responses contained at least one gesture. Finally, the higher the level of task difficulty, the more gestures the students made.

Vitamin D measurements and dual energy x-ray absorptiometry (DXA) scans are recommended in people with intellectual disability and/or epilepsy in order to prevent bone-linked harm. The prevalence of vitamin D supplementation and bone mineral density screening were evaluated in 68 people with epilepsy and intellectual disability (EID) and 68 matched controls with epilepsy without intellectual disability. DXA scans were not performed in any of the people with EID but were performed in 11.8% of the people in the control group. People with EID had a higher vitamin D supplementation rate and were treated with more antiepileptic drugs (AEDs) and more AED combinations, including first generation AEDs. Increased awareness of bone health screening in people with epilepsy and especially EID is warranted.

This study describes the role of psychiatric pharmacists (PPs) in medication management at a county-hospital-based primary care clinic serving adults with intellectual and developmental disabilities (IDD). During a 20-week period, PPs provided 308 interventions for 97 patients with IDD, 55% of whom had a concomitant psychiatric/behavioral disorder and 70% of whom were taking at least one psychotropic medication. PP services included medication reviews (48%), medication histories (13%), collaborative care (12%), pharmacotherapy interventions (11%), advisory services (9%), and patient/caregiver education (7%). Psychotropics were involved in 66% of interventions. Our results demonstrate that PPs may address psychotropic-related challenges in this practice setting by performing a variety of services. Additional studies are needed to fully evaluate the impact of this integrative model.

Various intervention usage is associated with positive outcomes for children with autism. However, the intensity of these interventions tends to be below recommendations, especially for minoritized children. This study aimed to examine how average weekly intervention hours among children vary by sociodemographic factors. Regression analyses were conducted using data from 2,857 participants with autism included in the Simons Simplex Collection. Findings indicated the amount and type of intervention received varied by race, ethnicity, family income, and maternal education. This study marks an important step in documenting the extent of sociodemographic intervention disparities; and, helps to elucidate which therapy types are most readily underused and by which groups to help inform approaches to increase more equitable access.

Medical professionals commonly report having inadequate training providing care for individuals with intellectual and developmental disabilities (IDD). This pilot study aimed to address this gap through a virtual Objective Structured Clinical Examinations (OSCE) with individuals with IDD as patient educators for 25 first- and second-year medical students (OSCE participants). Quantitative data through the Prediger competency scale and qualitative data through a semistructured interview were analyzed. OSCE participants reported a significant increase (p < 0.05) in self-perceived competency scores when comparing pre- and post-OSCE scores. Qualitative analysis yielded themes corresponding to improving skills, practice considerations, and perspectives and biases changes. These results suggested that this virtual OSCE promoted the development of self-perceived clinical competency and comfort providing care for individuals with IDD.

Sibling relationships often involve exchanges of emotional and tangible support. When one sibling has a disability, the nature of the reciprocity of such support may differ from sibling pairs wherein no disability is present. Specifically, when an individual has autism, the nature of emotional and tangible reciprocity is unclear given the potential for a supportive or caregiving role of the sibling without autism. In this study, 256 adult siblings of autistic individuals completed a national survey. Analyses included descriptive statistics describing the nature of reciprocity and hierarchical regressions to identify the correlates of emotional and tangible reciprocity. Overall, participants often reported not giving or receiving much tangible support to/from their autistic sibling while they often gave and, to some extent received, emotional support from their autistic sibling. When the autistic sibling had more asocial behaviors, participants were more likely to provide emotional support than receive it. When participants engaged in more caregiving, they both gave and received more emotional and tangible support. Implications for research and practice are discussed.

Students with complex support needs have intense and frequent support needs for learning and participating across multiple domains. Addressing those needs in a comprehensive manner is the purpose of special education, which is accomplished through instructional and Individualized Education Program (IEP) goals. Yet simply setting goals is insufficient; to facilitate positive student outcomes, there is an inherent expectation that students will meet those goals to achieve their potential. Understanding factors that impact variability in goal attainment is essential to this purpose. This includes the extent to which variability in goal attainment is explained by factors varying within students (e.g., goal domains being targeted) or by factors varying between students (e.g., education placement, overall intensity of student support needs). Using Bayesian multi-level modeling analysis to examine the instructional goals of 53 elementary students with complex support needs, we found that 75% of variability in goal attainment exists within student's goals. However, 25% of variability is explained by factors that vary across students-in this case, educational placement and overall intensity of support needs. We conclude with recommendations for research and practice aimed at enhancing goal attainment for students with complex support needs.

Despite a growing number of adults with intellectual and developmental disabilities (IDD) and documented risk for adverse outcomes as they age, little is known about the health and healthcare patterns of adults with different IDD throughout adulthood. This study uses Wisconsin Medicaid claims data to characterize health conditions among adults with IDD. Results indicate high prevalence of asthma, diabetes, heart disease, and hypertension. Heart disease rates were particularly high, having been observed among 39% of autistic adults, 64% of autistic adults with intellectual disability (ID), 67% of adults with Down syndrome, and 75% of adults with ID only. Given there are no known biological differences underlying increased morbidities among most people with IDD, developing inclusive prevention measures should be prioritized in future research.

Extracorporeal life support, such as pediatric cardiac extracorporeal membrane oxygenation (ECMO), is associated with significant mortality and morbidity risk. This study evaluated cardiac ECMO survivors with central cannulation and found that 51.1% were discharged from the hospital. The study also revealed high rates of developmental delay (82.7%), motor dysfunction (58.8%), and cognitive dysfunction (70.6%) among survivors. No significant correlation was found between the duration of ECMO, age at ECMO, pre-ECMO maximum lactate levels, and cognitive scores. Participants with motor dysfunction were significantly younger (p = 0.04). PRISM scores of those with an abnormal developmental status were significantly higher (p = 0.03). Logistic regression analysis did not show a significantly increased risk. Factors such as age, disease severity, and ECMO itself were identified as potential contributors to neurodevelopmental delay.

Motivation is a key factor for child development, but very few studies have examined child and family predictors of both child task and perceived motivation. Thus, the three aims of this 6-month longitudinal study in preschoolers with global developmental delays (GDD) were to explore: 1) differences between task and perceived motivation in cognitive domain; 2) differences among three domains of perceived motivation: cognitive, gross motor, and social; and 3) early child and family predictors of cognitive task motivation and the three domains of perceived motivation 6 months later. Results indicated that preschoolers with GDD showed higher cognitive task motivation than cognitive perceived motivation, and lower perceived cognitive motivation than the other two perceived motivation domains. Different child and family factors predicted cognitive task motivation and the three domains of perceived motivation. Practitioners should educate caregivers on how to observe children's motivation to enhance children's active participation.

The field of disabilities is being challenged to adopt a paradigm that can be used to guide the transformation of services, supports, and research practices to ensure and enhance the personal autonomy, rights, and community inclusion of people with disabilities. This article describes strategies associated with the systematic diffusion and sustainability of an innovation such as the emerging Shared Citizenship Paradigm (SCP), which has the potential to guide the transformation. The systematic diffusion process incorporates five components: knowledge, persuasion, decision, implementation, and confirmation. The systematic process also addresses the risks of dissonance, backlash, unintended consequences, and backsliding that can emerge when the sustainability of a paradigm is not supported. Throughout the article, we stress that meaningful change in organizations and systems requires use of a paradigm such as the SCP and its principles and foundation pillars to guide the change, and a systematic process such as that described in this article to bring about and sustain the change.

Researchers and advocates have long called for improved research methods that better include people with intellectual and developmental disabilities (IDD), but challenges to doing so persist. Proxy responses are frequently used to circumvent some of these challenges, but may not fully capture the perspectives of people with IDD. The COVID-19 pandemic highlighted the possibility of consequences due to a lack of research about health outcomes for people with IDD, with documented disproportionate impact but little understanding about specific experiences for people with IDD. Using exploratory graph analysis (EGA) we explored the use of proxy responses on the COVID-19 Supplement of the National Core Indicators In-Person Survey. Findings suggest significant differences in response patterns between people who answered independently, via proxy, and with a mix of response types beyond what would be expected due to demographic differences in participants.

The literature has yet to review the differential effects of Natural Environment Teaching (NET) and Discrete Trial Teaching (DTT) on adaptive skills. A sample of 142 children diagnosed with ASD between the ages of 16 and 35 months received either DTT, NET, or both interventions (NET+ DTT). The Bayley Scales of Infant and Toddler Development (BSID) Adaptive Subscale and the Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) Barriers Assessment were used as baseline and posttest measures. Children who received NET and NET+DTT conditions showed significant improvements compared to the DTT condition indicating that the addition of NET leads to increased adaptive skills and decreased barrier behaviors in participants. DTT may also play a necessary foundational role for children with more significant delays. These results provide support for the use of a combination of teaching strategies in community-based early intervention and refine protocols for teaching adaptive skills to toddlers with ASD.

This study examines the intervention effect of a culturally tailored parent education program in reducing depressive symptoms among Latina mothers of autistic children. In this two-site randomized waitlist-control study (n = 109 mother-child dyads), a peer-to-peer mentoring (promotora) model was used to deliver an intervention that was designed to increase mothers' self-efficacy and use of evidence-based strategies. We assessed mothers' depressive symptom (CES-D) scores at three time points and used linear mixed models to determine whether their scores significantly changed from baseline to postintervention (Time 2) and at 4 months postintervention (Time 3). Results show that mothers in the intervention group reported a significant decrease in mean depressive symptom scores at Time 2 and that the effect was maintained at Time 3 with intermediate to medium effect sizes. There were no differences in results across sites. Findings suggest that Parents Taking Action, a culturally tailored intervention led by peer mentors, showed a significant effect both immediately after the intervention and 4 months postintervention in reducing depressive symptoms among Latina mothers of autistic children.

The current study examines the efficacy of an 8-week pretend play intervention targeting social-cognitive abilities in children with Prader-Willi syndrome (PWS), ages 6-9. PWS is a rare disorder associated with various social, emotional, and cognitive challenges linked to pretend play impairments, and for which interventions are sparse. Nineteen children were quasi-randomized to receive the intervention or be part of a waitlist control group. Participants who received the intervention (n = 10) demonstrated significant improvements in various components of pretend play, most notably in organization of play, which may generalize to broader social-cognitive gains. These findings provide evidence of the intervention's efficacy in enhancing pretend play skills and related social-cognitive abilities during this critical period of development for children with PWS.

Understanding factors that can improve the quality of life (QOL) of older caregivers of people with intellectual and developmental disabilities (IDD) is important in broadening participation in family empowerment interventions. The purpose of this study was to identify the factors influencing the QOL of older caregivers (50+) of adults with IDD who participated in a peer-mediated state-wide family support project. The research study used a quasi-experimental research design grounded in the family quality of life (FQOL) framework, with pretest and posttest data gathered from 82 caregivers. Correlation and regression analyses were conducted to identify factors influencing changes in the QOL of study participants. Findings indicated that improvements in caregiver QOL after participating in the project could be explained by caregiver's employment status, increased global FQOL, and decreased caregiver stress and depression.

Although natural supports benefit individuals with intellectual and developmental disabilities (IDD), little is known about natural support provided within specific life domains or how race/ethnicity or support from professionals impacts the extent of natural support one receives. In this study, 518 parents of adults with IDD responded to a national survey about natural supports, including who provides support, the number of supporters, and variables that predict natural supports. Family most often provided support, although professionals and family friends were frequent supporters in several domains. Natural support was most extensive in health, least extensive in employment and housing. Individuals with IDD who regularly participated in daytime activities and/or identified as Black had more extensive natural support. Implications are discussed.

Hyperphagia is highly penetrant in Prader-Willi syndrome (PWS) and has increasingly been reported in other neurogenetic conditions (NGC). The Hyperphagia Questionnaire (HQ) was completed by caregivers of 4-8-year-olds with PWS (n = 17), Angelman syndrome (AS; n = 22), Williams syndrome (WS; n = 25), or low-risk controls (LRC; n = 35). All NGC groups were significantly elevated in HQ Total and Behavior scores compared to LRC. Only AS and WS were significantly elevated in the Drive domain, and only PWS in the Severity domain. After controlling for externalizing behavior, HQ Total scores were higher for PWS relative to other groups. Hyperphagic symptoms may not differentiate PWS from other NGCs in early childhood. However, hyperphagic phenotypes may be most severe in PWS. Further investigation of these profiles may inform etiology and syndrome-specific treatments.

This study aimed to describe the behavioral profile of individuals with SYNGAP1-ID. Parents/carers of 30 individuals aged 3-18 years old with a diagnosis of SYNGAP1-ID and 21 typically developing individuals completed the Vineland-3 Adaptive Behavior Scale and the Child Behavior Checklist. We found that those with SYNGAP1-ID showed fewer adaptive behaviors and higher levels of internalizing and externalizing behaviors across almost all domains compared to typically developing controls. There was some evidence that these differences were greatest in older children, and more apparent in those with co-occuring epilepsy. This characterization of the phenotype of SYNGAP1-ID significantly aids our understanding of the behavioral profile of this population and is a step towards the development of tailored interventions.