BACKGROUND: People with developmental disabilities make important contributions to research. However, inaccessible research ethics trainings present a barrier to them taking on some research roles.
OBJECTIVE: We developed a social-behavioral research ethics training that leads to certification tailored to the accessibility needs and roles of community research partners with developmental disabilities.
METHODS: We collaborated with diverse partners (people with developmental disabilities, a disability service provider, health researchers, human research participant protections experts) to develop the research ethics training. To identify potential training content, we conducted a rapid scoping review of ethical, legal, and social issues in social-behavioral research with adults with developmental disabilities and reviewed national research ethics curricula. Through discussions and a modified Delphi process, we worked with partners to identify content to teach; partners also provided guidance on accessibility.
RESULTS: The training and rapid scoping reviews and input from partners resulted in 93 potential educational content elements to include. After completing the modified Delphi process, partners recommended inclusion of 83 of these content elements in the educational training and provided input on depth and approach to teaching this content. Research Ethics for All is a freely available training that includes 5 units, delivered via didactic and active learning, and assessment activities to verify understanding. Research Ethics for All should be facilitated by an experienced researcher.
CONCLUSIONS: Research Ethics for All includes foundational social-behavioral research ethics content designed to support community research partners with developmental disabilities to take on new research responsibilities.

OBJECTIVE: Effective strategies and practices can assist in forming future initiatives and policies to improve oral health for individuals with intellectual and developmental disabilities (IDD). This manuscript aims to describe the Tufts Dental Facilities (TDF), a university-state collaboration providing sustained statewide access to comprehensive oral health care for individuals with IDD.
METHODS: The TDF program was established in 1976 as the result of a class action lawsuit to improve medical and dental care for individuals with IDD residing at state institutions in Massachusetts. TDF, A partnership, between Tufts University School of Dental Medicine (TUSDM) and the Commonwealth of Massachusetts, is a network of seven dental clinics strategically positioned across the state. These clinics are specifically designed to meet the oral health needs of individuals with IDD. TUSDM\'s oral health providers with expertise in special care dentistry deliver comprehensive oral health care for over 6500 individuals with IDD, incorporating supportive care services and access to general anesthesia. Additionally, the program provides training in special care dentistry for dental residents and pre-doctoral dental students.
CONCLUSIONS: Leveraging state and university resources, TDF provides a model of a sustainable, long-term system for statewide access to oral health care for individuals with IDD.

This review evaluated single-case experimental design research that examined challenging behavior interventions utilizing punishment elements. Thirty articles published between 2013 and 2022 met study inclusion criteria. Study quality was also assessed. Through multiple levels of analysis (e.g., descriptive statistics, non-parametric statistics), we examined (a) participant and study trends, (b) differential outcomes related to temporal reinforcement approaches (antecedent, consequent, or combined reinforcement) applied alongside punishment element(s), (c) differential outcomes related to the punishment type (negative, positive) applied alongside reinforcement, and (d) effect sizes associated with study rigor across peer-reviewed and gray literature. Our results may tentatively suggest that, for certain situations, concurrently applying punishment with antecedent reinforcement approaches may coincide with significantly larger effect sizes compared to combined temporal reinforcement approaches, while positive punishment applied concurrently with reinforcement may coincide with larger but non-significant intervention effects. Most featured articles met rigor criteria, but larger effects were seen in peer-reviewed literature.

BACKGROUND: People with serious mental illness (SMI) and people with intellectual disabilities/developmental disabilities (ID/DD) are at higher risk for COVID-19 and more severe outcomes. We compare a tailored versus general best practice COVID-19 prevention program in group homes (GHs) for people with SMI or ID/DD in Massachusetts (MA).
METHODS: A hybrid effectiveness-implementation cluster randomized control trial compared a four-component implementation strategy (Tailored Best Practices: TBP) to dissemination of standard prevention guidelines (General Best-Practices: GBP) in GHs across six MA behavioral health agencies. GBP consisted of standard best practices for preventing COVID-19. TBP included GBP plus four components including: (1) trusted-messenger peer testimonials on benefits of vaccination; (2) motivational interviewing; (3) interactive education on preventive practices; and (4) fidelity feedback dashboards for GHs. Primary implementation outcomes were full COVID-19 vaccination rates (baseline: 1/1/2021-3/31/2021) and fidelity scores (baseline: 5/1/21-7/30/21), at 3-month intervals to 15-month follow-up until October 2022. The primary effectiveness outcome was COVID-19 infection (baseline: 1/1/2021-3/31/2021), measured every 3 months to 15-month follow-up. Cumulative incidence of vaccinations were estimated using Kaplan-Meier curves. Cox frailty models evaluate differences in vaccination uptake and secondary outcomes. Linear mixed models (LMMs) and Poisson generalized linear mixed models (GLMMs) were used to evaluate differences in fidelity scores and incidence of COVID-19 infections.
RESULTS: GHs (n=415) were randomized to TBP (n=208) and GBP (n=207) including 3,836 residents (1,041 ID/DD; 2,795 SMI) and 5,538 staff. No differences were found in fidelity scores or COVID-19 incidence rates between TBP and GBP, however TBP had greater acceptability, appropriateness, and feasibility. No overall differences in vaccination rates were found between TBP and GBP. However, among unvaccinated group home residents with mental disabilities, non-White residents achieved full vaccination status at double the rate for TBP (28.6%) compared to GBP (14.4%) at 15 months. Additionally, the impact of TBP on vaccine uptake was over two-times greater for non-White residents compared to non-Hispanic White residents (ratio of HR for TBP between non-White and non-Hispanic White: 2.28, p = 0.03).
CONCLUSIONS: Tailored COVID-19 prevention strategies are beneficial as a feasible and acceptable implementation strategy with the potential to reduce disparities in vaccine acceptance among the subgroup of non-White individuals with mental disabilities.
BACKGROUND: ClinicalTrials.gov, NCT04726371, 27/01/2021. https://clinicaltrials.gov/study/NCT04726371 .

BACKGROUND: Intellectual and developmental disabilities (IDDs) are associated with both cognitive challenges and difficulties in conceptual, social, and practical areas of living, commonly referred to as adaptive behavior (DSM-5). Although cross-sectional associations between intelligence or cognition and adaptive behavior have been reported in IDD populations, no study to date has examined whether developmental changes in cognition contribute to or track with changes in adaptive behavior. The present study sought to examine associations of longitudinal developmental change in domains of cognition (NIH Toolbox Cognition Battery, NIHTB-CB) and adaptive behavior domains (Vineland Adaptive Behavior Scales-3; VABS-3) including Socialization, Communication, and Daily Living Skills (DLS) over a two year period in a large sample of children, adolescents and young adults with IDD.
METHODS: Three groups were recruited, including those with fragile X syndrome, Down syndrome, and other/idiopathic intellectual disability. Eligible participants (n = 263) included those who were between 6 and 26 years (mage = 15.52, sd = 5.17) at Visit 1, and who had a diagnosis of, or suspected intellectual disability (ID), including borderline ID, with a mental age of at least 3.0 years. Participants were given cognitive and adaptive behavior assessments at two time points over a two year period (m = 2.45 years, range = 1.27 to 5.56 years). In order to examine the association of developmental change between cognitive and adaptive behavior domains, bivariate latent change score (BLCS) models were fit to compare change in the three cognitive domains measured by the NIHTB-CB (Fluid Cognition, Crystallized Cognition, Total Cognition) and the three adaptive behavior domains measured by the VABS-3 (Communication, DLS, and Socialization).
RESULTS: Over a two year period, change in cognition (both Crystallized and Total Composites) was significantly and positively associated with change in daily living skills. Also, baseline cognition level predicted growth in adaptive behavior, however baseline adaptive behavior did not predict growth in cognition in any model.
CONCLUSIONS: The present study demonstrated that developmental changes in cognition and adaptive behavior are associated in children and young adults with IDD, indicating the potential for cross-domain effects of intervention. Notably, improvements in DLS emerged as a primary area of adaptive behavior that positively related to improvements in cognition. This work provides evidence for the clinical, \"real life\" meaningfulness of changes in cognition detected by the NIHTB-CB in IDD, and provides empirical support for the NIHTB-CB as a fit-for-purpose performance-based outcome measure for this population.

In the United States, direct support professionals (DSPs) support people with intellectual and developmental disabilities (IDD) so they can live in the community. Thirty years of deinstitutionalization and the development of community living options would not have been possible without DSPs. Although life for people with IDD improved greatly, working conditions, wages/benefits, demands, stress/burnout, and trauma experienced by DSPs have worsened. Turnover and vacancy rates threaten the availability of community supports for too many people with IDD. DSPs from diverse racial, ethnic, linguistic, and cultural backgrounds face significant workplace disparities. These issues were discussed during the Research and Training Center on Community Living\'s 2022 State of the Science Conference. We propose important research questions needing solutions to continue constructively addressing these critical issues.

BACKGROUND: Children and young people (CYP) with intellectual and developmental disabilities (IDDs) have significant additional educational needs compared with the general population. In England, the government has established a system of education, health and care plans (EHCPs) to support children with special educational needs and disabilities, but disparities exist between the degree of need and the availability of support. We conducted a prospective UK national cohort study (IMAGINE) of children with rare pathogenic genomic variants, all of which are associated with IDD, to investigate associated neuropsychiatric risk. Subsequently, we obtained information from the UK\'s National Pupil Database on their educational progress through the state school system. We aimed to identify whether they had received EHCP provision and whether that support was associated with their family\'s socioeconomic status, region of domicile, ethnicity, sex, primary special educational needs (SEN) type, academic performance and mental health well-being.
METHODS: We recruited 2738 CYP from England into the IMAGINE study between 2014 and 2019. The educational histories of the participants (6-28 years old, mean ± standard deviation = 14 ± 4 years, 56% male) were obtained from the Department for Education\'s National Pupil Database in 2021. Educational data included attainment scores from the Early Year Foundation Stage (<5 years) to key stage 4 (15-16 years). Each family was assigned an index of multiple deprivation (IMD) score based on their home address postcode. Parents or carers rated their child\'s emotional and behavioural adjustment on the Strengths and Difficulties Questionnaire (SDQ). The association between receiving an EHCP and the child\'s IMD score, eligibility for free school meals, English region of domicile, ethnicity, sex, primary SEN type, academic attainment and SDQ score was investigated.
RESULTS: In this cohort, 78% of participants had received an EHCP. CYP living in the most deprived IMD deciles were substantially less likely to receive EHCP support than those in the least deprived decile, irrespective of their degree of intellectual developmental disability, academic performance or associated mental health problems. There were no sex differences. Children of Asian heritage were more likely to have been granted an EHCP than White children from equivalent IMD deciles. There were striking regional disparities. Participants living in London were significantly more likely to have been awarded an EHCP than participants living anywhere else in England, regardless of their IMD decile; those in the least deprived decile had almost 100% EHCP provision.
CONCLUSIONS: This study found evidence for nationwide regional inconsistencies in the awarding of EHCP to CYP with significant intellectual impairments of known genetic aetiology. Disparities in funds available to education authorities could be a contributory factor. EHCP support was potentially influenced by how strongly a parent advocates for their child.

BACKGROUND: Medical trainees (medical students, residents, and fellows) are playing an active role in the development of new curricular initiatives; however, examinations of their advocacy efforts are rarely reported. The purpose of this study was to understand the experiences of trainees advocating for improved medical education on the care of people with intellectual and/or developmental disabilities.
METHODS: In 2022-23, the authors conducted an explanatory, sequential, mixed methods study using a constructivist paradigm to analyze the experiences of trainee advocates. They used descriptive statistics to analyze quantitative data collected through surveys. Participant interviews then yielded qualitative data that they examined using team-based deductive and inductive thematic analysis. The authors applied Kern\'s six-step approach to curriculum development as a framework for analyzing and reporting results.
RESULTS: A total of 24 participants completed the surveys, of whom 12 volunteered to be interviewed. Most survey participants were medical students who reported successful advocacy efforts despite administrative challenges. Several themes were identified that mapped to Steps 2, 4, and 5 of the Kern framework: \"Utilizing Trainee Feedback\" related to Needs Assessment of Targeted Learners (Kern Step 2); \"Inclusion\" related to Educational Strategies (Kern Step 4); and \"Obstacles\", \"Catalysts\", and \"Sustainability\" related to Curriculum Implementation (Kern Step 5).
CONCLUSIONS: Trainee advocates are influencing the development and implementation of medical education related to the care of people with intellectual and/or developmental disabilities. Their successes are influenced by engaged mentors, patient partners, and receptive institutions and their experiences provide a novel insight into the process of trainee-driven curriculum advocacy.

BACKGROUND: People with intellectual and developmental disabilities (IDD) in the US, especially those living in group homes, experienced comparatively higher Covid-19 case/case fatality rates than the general population during the first year of the pandemic. There is no information about the patterns of case/case fatality rates during this time.
OBJECTIVE: This study compared Covid-19 case/case fatality rates among people with IDD living in residential group homes to the general population across the first year of the pandemic in New York State (NYS).
METHODS: Covid-19 positive cases and deaths collected from New York Disability Advocates (NYDA), a coalition of organizations serving individuals with IDD, was compared to data for the NYS general population from the first pandemic year. Case rates/100,000 and case fatality rates were calculated for the study period. Joinpoint Trend Analysis Software was used to analyze patterns in weekly case/case fatality rates.
RESULTS: Case fatality rates for people with IDD were higher than for the overall state population throughout the pandemic\'s first year. Case rates were higher among people with IDD across most of this year. Although the patterns in rates were similar, there was a sharp increase in cases for those with IDD during Fall 2020 beginning eight weeks before the general NYS population and a significant decrease in fatalities in late December 2020 into January 2021.
CONCLUSIONS: Consistently higher case fatality rates and significant differences in case/case fatality rates for people with IDD living in group homes require further consideration. Planning for future emergencies will require an enhanced federal/state understanding of the needs of people with IDD and a responsive surveillance system.

The practice of physical activity, exercise and sport has many benefits for the general population, but studies on the population with intellectual and developmental disabilities (IDD) are scarce and inconclusive. The aim of this systematic review is to analyze the state of the art on the role of physical activity, exercise and sport in the quality of life and well-being of people with IDD, seeking to understand the current panorama in this area and provide answers to these questions. The research was carried out between July and October 2023 using three databases: PubMed, Web of Science and Scopus. Fifteen articles met the eligibility criteria for this study, and these were methodologically assessed using the Downs and Black scale (1998). Higher values were identified in the total quality of life score and some domains of this variable (e.g., personal development, physical well-being and emotional well-being), in satisfaction with life and in the perception of well-being in individuals with IDD who have enjoyed or are involved in physical activity, physical exercise and/or sports programs. Thus, according to the studies included in this systematic review, we can conclude that the practice of physical activity, physical exercise and sport seems to contribute to improving the quality of life and well-being of people with IDD. Despite the growing research interest in this area, there is still a notable lack of studies exploring the impact of these programs, especially sports-based programs, on quality of life and well-being variables in the population under study.