BENDI: Improving Cognitive Assessments in Toddlers and Children with Down Syndrome Using Stealth Assessment.

Cognitive assessment is a fundamental step in diagnosing intellectual and developmental disabilities, designing interventions, and evaluating their impact. However, developed and developing countries have different access to tools designed for these purposes. Our goal was to develop a battery for cognitive assessment mediated by digital technology that allows the exploration of cognitive domains (inhibitory control, attention, motor ability, and context memory) in children with Down Syndrome (DS) in Chile. Four tasks, based on established experimental paradigms modified to provide a game-like experience, were tested in 68 children with DS from 20 months to 12 years of age. We present evidence of reliability based on internal consistency and split-half analyses, with results ranging from adequate to excellent. Regarding validity, factorial and correlational analyses show evidence consistent with what was theoretically expected of internal structure, convergence, and divergence with other measures. Expected age trajectories were observed as well. Our data offer evidence that supports the use of tasks based on touch-screen devices for cognitive assessment in the population with DS. The tasks also have a low cultural load, so they could be validated and used in other contexts without the need for an adaptation process.

Study of a set of reading precursors among Chilean children with Down syndrome.

Learning to read for children with Down syndrome is relevant because of the impact this ability has on learning and the development of autonomy. Previous research has described reading development in this population, but it is not clear if the process and precursors are the same in a transparent language like Spanish. This study explores performance in a set of precursors (phonological awareness, visual recognition, vocabulary, letter knowledge and verbal reasoning) in 42 children with Down syndrome between 6:0 and 10:11 years. We hypothesized that the participants would have a lower performance than previously reported with children with typical development, particularly in tasks of phonological awareness, because the method for reading instruction in Chile with this population is usually the global method. Our results show that the precursors improve with age, that there are differences in performance between the skills assessed, and the ceiling effect was not observed as would be expected for children with typical development for the abilities assessed at these ages, which suggests that in the children assessed the precursors are not consolidated at these ages. These results suggest that the stimulation of phonological awareness and other reading precursors in children with Down syndrome is important for reading development.

PaísDI: Feasibility and effectiveness of an advocacy program for adults with intellectual disability and their stakeholders' groups in Chile.

BACKGROUND: People with intellectual disability in Chile face individual and collective barriers to social participation. Lack of knowledge about their rights and tools for effective self-advocacy seem to be key elements that need to be improved to facilitate participation. METHOD: We present PaísDI, a 16 h long manualised program created by self-advocates in collaboration with an interdisciplinary team, with four modules: rights and intellectual disability, leadership in intellectual disability, effective communication and financial considerations of social projects. This quasi-experimental study had 349 participants, divided in three groups: people with intellectual disability, relatives and professionals. Feasibility and effectiveness where measured. RESULTS: The program is shown to be viable and effective, especially in its impact on self-perception for self-advocacy activities. CONCLUSION: The discussion highlights Chile's historic debt in creating policies that promote self-determination, knowledge and the empowerment of people with intellectual disability, to bolster their participation as citizens.

Factors leading to effective social participation promotion interventions for people with intellectual disability: a protocol for a systematic review.

BACKGROUND: People with intellectual disabilities have been historically excluded from decision-making processes. Previous literature indicates that increasing social participation may be an effective way to address this exclusion, but no systematic review of interventions designed to increase social participation of people with intellectual disabilities have been conducted. This study aims to identify and organize the factors associated with interventions that increase the social participation of people with intellectual disabilities and to provide a set of best of practices for future interventions. METHODS/DESIGN: The databases Web of Science, Scopus, LILACS, and PubMed will be searched for articles from January 2004 onwards; grey literature search will be identified through searching additional databases (such as Google Scholar and EBSCO databases). Randomized controlled trials, nonrandomized controlled trials, and controlled pre-post studies will be included. Noncontrolled pre-post studies will also be included. Observational or qualitative studies will be excluded. The primary outcomes are measures of social participation. Secondary outcomes include measures of well-being, stigma, knowledge about rights, and advocacy processes. Two reviewers will independently screen articles, extract relevant data, and assess the quality of the studies. We will provide a meta-analysis of included studies if possible, or a quantitative narrative synthesis otherwise. DISCUSSION: This systematic review will add to our understanding of effective social participation interventions for people with intellectual disability. It will allow us to identify and organize which factors lead to an increase in social participation and help us define a set of best practices to be followed by future interventions. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42020189093.

The impact of the COVID-19 pandemic on the health, wellbeing, and access to services of people with intellectual and developmental disabilities.

BACKGROUND: Individuals with intellectual and developmental disabilities (IDD) may be especially vulnerable to changes associated with the COVID-19 pandemic given an increased likelihood of health concerns, low socioeconomic status, and difficulty accessing services. AIMS: The purpose of this study was to explore mental health problems and services in individuals with IDD during the pandemic. We explored whether number of mental health problems differed by disability, age, gender, living situation, physical health, and access to services. METHODS AND PROCEDURES: An online survey about experiences during the pandemic was administered to adults with IDD and their caregivers in the United States and in Chile. OUTCOMES AND RESULTS: In both Chile and the United States, few people endorsed increased health problems. Half of the sample in Chile and 41 % of the sample in the United States endorsed increased mental health problems. Approximately 15 % of the sample in the US reported no longer receiving state developmental disability services. CONCLUSIONS AND IMPLICATIONS: Healthcare and disability-specific agencies should consider strategies to tailor supports to improve mental health functioning and access to community.

Parental styles and attitudes of fathers of children and adolescents with intellectual disability: Do parental styles and attitudes impact children's adaptive behaviour?

BACKGROUND: There is little literature that has explored the paternal role among children with intellectual disabilities. The aim of the study is to characterise parental attitudes and styles of fathers of children with intellectual disabilities, and to analyse their relation to the children's adaptive behaviour. METHOD: Eighty-three families (fathers and mothers) answered self-report questionnaires, which assessed parenting styles and attitudes, as well as an adaptive behaviour questionnaire about their children with intellectual disabilities between 4 and 18 years of age. RESULTS: Both parents have a tendency towards an authoritative style of parenting. Fathers (versus mothers) perceive greater parental support but are less involved in their children's lives. Among fathers, the authoritative style was a significant contributor to the child's adaptive behaviour, above and beyond the mother's contribution. CONCLUSIONS: Studies about parenting should include both mothers and fathers, as paternal parenting styles and attitudes are related to children's adaptive behaviour.

Different abilities needed at home and school: The relation between executive function and adaptive behaviour in adolescents with Down syndrome.

Studies have shown that executive function abilities are related and have predictive power over adaptive behaviour in both typical and atypical populations. This study examined the relationship between executive functioning and adaptive behaviour in adolescents with Down syndrome, as it has not been studied before in this population. We propose and test a model of how each core EF (i.e., working memory, inhibition, and flexibility) contributes to each domain of AB (i.e., conceptual, social, and practical). We found that parent reported Conceptual skills were related to working memory, while teacher reported Conceptual and Practical skills were related to inhibition and flexibility. We hypothesise that these findings are related to the different requirements and expectations of the home and school environments: the more predictable home environment requires the adolescent to rely on working memory for his everyday activities, while the changing and challenging school environment requires the inhibition common behaviours and to flexibly change actions to be successful.

Movilidad temprana: un reto para el contexto colombiano / Early mobility: a challenge for the Colombian context

El 15 % de la población mundial tiene algún tipo de discapacidad y necesita de productos de apoyo. En el caso de los niños, estos son fundamentales ya que permiten la exploración del entorno y potencian sus capacidades. En países como Colombia, donde el acceso a los productos de apoyo está parcialmente reglamentado pero no todas las personas acceden estos, un programa como Go baby Go se hace relevante; este es un programa que modifica y entrega carritos de batería para favorecer el juego y la participación de niños con discapacidad.

15% of the world's population has some kind of disability and needs assistive products. In the case of children, these are essential as they allow them to explore their environment and enhance their capabilities. In countries like Colombia, where access to assistive products is partially regulated but not all people have access to them, a program like Go baby Go becomes relevant; this is a program that modifies and delivers battery carts to encourage play and participation of children with disabilities.