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Importance: At least 10 million people in the United States have an intellectual and/or developmental disability (IDD). People with IDD experience considerably higher rates of poor overall health, chronic conditions including diabetes, mental health challenges, maternal mortality, and preventable deaths. This Special Communication proposes national goals based on a community-led consensus model that advances priority health outcomes for people with IDD and their caregivers/partners and identifies critical policy opportunities and challenges in achieving these goals. A community-led consensus agenda offers a foundation for focusing research, improving data collection and quality measurement, enhancing coverage and payment for services, and investing in a prepared clinical workforce and infrastructure in ways that align with lived experiences and perspectives of community members. Observations: People with IDD prioritize holistic health outcomes and tailored supports and services, driven by personalized health goals, which shift over their life course. Caregivers/partners need support for their own well-being, and easy access to resources to optimize how they support loved ones with IDD. Development of an adequately prepared clinical workforce to serve people with IDD requires national and regional policy changes that incentivize and structure training and continuing education. Ensuring effective and high-value coverage, payment, and clinical decisions requires investments in new data repositories and data-sharing infrastructure, shared learning across public and private payers, and development of new technologies and tools to empower people with IDD to actively participate in their own health care. Conclusions and Relevance: Consensus health priorities identified in this project and centered on IDD community members' perspectives are generalizable to many other patient populations. Public and private payers and regulators setting standards for health information technology have an opportunity to promote clinical data collection that focuses on individuals' needs, quality measurement that emphasizes person-centered goals rather than primarily clinical guidelines, and direct involvement of community members in the design of payment policies. Clinical education leaders, accrediting bodies, and investors/entrepreneurs have an opportunity to innovate a better prepared health care workforce and shared data infrastructure to support value-based care programs.
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Discapacidades del Desarrollo , Política de Salud , Discapacidad Intelectual , Humanos , Discapacidad Intelectual/terapia , Discapacidades del Desarrollo/terapia , Estados UnidosRESUMEN
BACKGROUND: Prenatal alcohol exposure (PAE) can disrupt children's neurodevelopment and exert lasting influences on overall child well-being and family functioning. A comprehensive exploration of developmental outcomes in infants/toddlers with PAE seen for a diagnosis on the fetal alcohol spectrum can inform early identification and intervention. AIMS: To describe the prevalence and patterns of neurodevelopment, sensory processing, and emotional and behavioral functioning in a clinical sample of infants/toddlers with PAE. METHODS: In this retrospective analysis, clinical data from 125 infants/toddlers with PAE, aged 2-42 months, assessed at the University of Washington Fetal Alcohol Syndrome Diagnostic and Prevention Network clinic were analyzed. RESULTS: Seventy-four to 87% of infants/toddlers demonstrated delayed development in one or more domains of the Bayley Scales of Infant and Toddler Development (n = 125). Adverse developmental outcomes were significantly correlated with PAE and/or postnatal risk factors. All 93 infants/toddlers with a complete Infant/Toddler Sensory Profile obtained definite difference scores in at least one quadrant/section. Over half of infant/toddlers with a completed Child Behavior Checklist/1½- 5 had total problem scores in the borderline or clinical range. CONCLUSIONS: Findings suggest that several domains of child functioning may be vulnerable to the teratogenic impact of PAE, and that these delays are evident in the first years of life. Early screening, ongoing monitoring and comprehensive assessment is needed to facilitate earlier identification and guide clinical intervention.
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Trastornos del Espectro Alcohólico Fetal , Efectos Tardíos de la Exposición Prenatal , Lactante , Humanos , Embarazo , Femenino , Preescolar , Estudios Retrospectivos , Efectos Tardíos de la Exposición Prenatal/epidemiología , Efectos Tardíos de la Exposición Prenatal/diagnóstico , Etanol/efectos adversos , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/epidemiología , Consumo de Bebidas Alcohólicas/efectos adversosRESUMEN
Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on social participation interventions and participation outcomes for autistic1 adults.
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Trastorno Autístico , Terapia Ocupacional , Humanos , Adulto , Participación Social , Práctica Clínica Basada en la EvidenciaRESUMEN
Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on work/employment interventions and participation outcomes for autistic1 adults.
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Trastorno Autístico , Terapia Ocupacional , Humanos , Adulto , Práctica Clínica Basada en la Evidencia , EmpleoRESUMEN
Caregiver-reported assessments provide opportunities for caregivers to share concerns and identify the strengths of their infant/toddler regarding prenatal alcohol exposure (PAE). These insights may reveal under-recognized concerns and inform a strengths-based approach to early intervention. The purpose of this study was to describe the type and frequency of caregiver-reported concerns and strengths in a sample of infants/toddlers at the time of their fetal alcohol spectrum disorder (FASD) diagnostic evaluation. Caregivers' concerns and strengths were identified in the context of two parent-report questionnaires, the Infant Toddler Sensory Profile and Child Behavior Checklist/1½-5. By using content analysis, caregivers' open-ended responses were identified, coded, and analyzed. The frequencies of all the coded concerns and strengths were counted. The data were compared across the two age groups (<2 years and ≥2 years) and caregiver status. Caregivers (n = 117) identified numerous concerns and strengths across multiple categories. The most frequently reported concerns were related to aggressive behavior, language/communication, and sensory processing. The most frequently reported strengths were related to happiness, sociability, and love. The type of concerns and strengths reported were relatively consistent across age and caregiver status. These findings reinforce the value of caregivers' perspectives and offer a reminder to practitioners that infants/toddlers with PAE and their caregivers have many strengths that can be harnessed, in addition to a range of challenges that must be addressed.
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To identify future research priorities and meaningful outcomes focused on community-level interventions for children and youth with intellectual and developmental disabilities and families, a group underrepresented in research, we established a diverse patient-centered outcomes research (PCOR) community. We focused on engaging regionally and nationally-diverse stakeholders-individuals, families, healthcare professionals, community, and policy experts-in research development activities that would build partnerships and research capacity. This community of stakeholders also represented the matrix of systems, services, and programs that people frequent in their communities (e.g., cultural arts, worship, sports and recreation, and transportation). We present the engagement process and methods for including individuals with intellectual and developmental disabilities as stakeholders in research planning and processes. The results of planning, completing, and evaluating three face-to-face research capacity-building meetings and their subsequent stakeholder engagement activities include: (1) individuals with intellectual and developmental disabilities and their families clearly expressed a desire to be included and to feel good about their participation in community settings, (2) many of our stakeholders wanted action and change to happen in their communities now, and often did not realize or understand that research takes time, (3) organizations expressed a need for mentoring related to best practices for access and inclusive programming. Overarching issues around societal inclusion, equal opportunities, and life chances for individuals with intellectual and developmental disabilities and their families were front and center across communities and multi-stakeholder groups, and achieving change remains valued and a high priority.
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BACKGROUND: Individuals with prenatal alcohol exposure (PAE) often present with a myriad of other prenatal (e.g. exposure to tobacco and other illicit drugs, poor prenatal care) and postnatal risk factors (e.g. multiple home placements, physical/sexual abuse, low socio-economic status)-all of which are likely contributing to their adverse outcomes. METHODS: A comprehensive neuropsychological battery, coupled with magnetic resonance imaging, was administered to children with fetal alcohol spectrum disorders (FASD) in 2009. Study participants diagnosed with FASD by the University of Washington using the FASD 4-Digit Code were compared to typically-developing peers with no PAE. Data from this MRI study were used to explore the proportion of variance in brain structural and functional abnormalities explained by PAE and 14 other prenatal and postnatal risk factors. RESULTS: PAE was the dominant risk factor explaining the largest proportion of variance in regional brain size (total brain, frontal lobe, caudate, hippocampus and corpus callosum) and brain function (intellect, achievement, memory, language, executive-function, motor, adaptation, behavior-attention and mental health symptoms). Other prenatal and postnatal risk factors were 3 to 7-fold more prevalent than in the general population. Individually, each risk factor explained a statistically significant, but smaller proportion of variance in brain outcome compared to PAE. In combination, the proportion of variance explained by the presence of multiple prenatal and postnatal risks rivaled that of PAE. CONCLUSION: A better understanding of the impact other prenatal and postnatal risk factors have on the neurodevelopmental outcomes of individuals with FASD can inform more effective prevention and intervention strategies.
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Executive functioning and self-regulation influence a range of outcomes across the life course including physical and mental health, educational success, and employment. Children prenatally exposed to alcohol or early life trauma (ELT) are at higher risk of impairment of these skills and may require intervention to address self-regulation deficits. Researchers partnered with the local Aboriginal health organization and schools to develop and pilot a manualized version of the Alert Program® in the Fitzroy Valley, north Western Australia, a region with documented high rates of fetal alcohol spectrum disorder and ELT. This self-controlled cluster randomized trial evaluated the effect of an 8-week Alert Program® intervention on children's executive functioning and self-regulation skills. Following parent or caregiver consent (referred to hereafter as parent), 271 students were enrolled in the study. This reflects a 75% participation rate and indicates the strong community support that exists for the study. Teachers from 26 primary school classrooms across eight Fitzroy Valley schools received training to deliver eight, one-hour Alert Program® lessons over eight-weeks to students. Student outcomes were measured by parent and teacher ratings of children's behavioral, emotional, and cognitive regulation. The mean number of lessons attended by children was 4.2. Although no significant improvements to children's executive functioning skills or behavior were detected via the teacher-rated measures as hypothesized, statistically significant improvements were noted on parent-rated measures of executive functioning and behavior. The effectiveness of future self-regulation programs may be enhanced through multimodal delivery through home, school and community based settings to maximize children's exposure to the intervention. Despite mixed findings of effect, this study was an important first step in adapting and evaluating the Alert Program® for use in remote Australian Aboriginal community schools, where access to self-regulation interventions is limited.
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Función Ejecutiva/fisiología , Servicios de Salud del Indígena , Nativos de Hawái y Otras Islas del Pacífico , Servicios de Salud Escolar , Instituciones Académicas , Autocontrol , Estudiantes , Australia , Niño , Preescolar , Docentes , Femenino , Humanos , Masculino , Padres , Encuestas y CuestionariosRESUMEN
BACKGROUND: Children with fetal alcohol spectrum disorders (FASD) and developmental coordination disorders (DCD) may show similar clinical sensory-motor symptoms. AIMS: This study aimed to compare motor skills and sensory processing behaviors between these two groups. METHODS AND PROCEDURES: In this retrospective analysis, we examined secondary data and used multivariate analysis of variance to compare the Movement Assessment Battery for Children-2 (MABC-2) and Sensory Processing Measure (SPM)-Home for 21 children with FASD and 21 with DCD without prenatal alcohol exposure, ages 5-13 years. OUTCOMES AND RESULTS: No significant group differences in mean total motor or subtest scores on the MABC-2 were detected, but a higher proportion of children with DCD had more severe motor delays. Both groups had sensory processing difficulties, but the children with FASD had significantly more sensory processing difficulties on the SPM total score and visual, touch, body awareness, and planning subscales. CONCLUSIONS AND IMPLICATIONS: The sensory processing symptoms in children with FASD distinguished the two groups. These group differences between children with FASD and DCD need corroboration in larger samples but haveimplications for differential diagnosis, clinical assessment, and targeted intervention.
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Trastornos del Espectro Alcohólico Fetal , Trastornos de la Destreza Motora , Efectos Tardíos de la Exposición Prenatal , Adolescente , Niño , Preescolar , Femenino , Humanos , Destreza Motora , Percepción , Embarazo , Estudios RetrospectivosRESUMEN
BACKGROUND: Atypical behavioral responses to sensation are reported in a large proportion of children affected by prenatal alcohol exposure (PAE). Systematic examination of symptoms across the fetal alcohol spectrum in a large clinical sample is needed to inform diagnosis and intervention. AIMS: To describe the prevalence and patterns of atypical sensory processing symptoms in a clinical sample of children with PAE. METHODS: Retrospective analysis of diagnostic clinical data from the University of Washington Fetal Alcohol Syndrome Diagnostic and Prevention Network (FASDPN). Participants were ages 3 through 11 years, had a diagnosis on the fetal alcohol spectrum, and Short Sensory Profile (SSP) assessment. The proportions of children categorized with definite differences on the SSP across selected clinical and demographic features were examined with chi-square analyses. OUTCOMES: The sample consisted of 325 children; 73.2 % had SSP total scores in the definite difference range. Atypical sensory processing symptoms were significantly more prevalent among children with higher reported levels of PAE. The prevalence of atypical symptoms was comparably high across age, levels of diagnostic severity, and other prenatal/postnatal risks. CONCLUSIONS: Results lend support for altered sensory processing as another domain of brain function affected by the teratogenic impact of PAE, guiding clinical work and research.
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Trastornos del Espectro Alcohólico Fetal/fisiopatología , Trastornos de la Percepción/fisiopatología , Trastorno por Déficit de Atención con Hiperactividad/epidemiología , Trastorno por Déficit de Atención con Hiperactividad/fisiopatología , Niño , Preescolar , Femenino , Trastornos del Espectro Alcohólico Fetal/epidemiología , Humanos , Masculino , Percepción , Trastornos de la Percepción/epidemiología , Prevalencia , Factores de RiesgoRESUMEN
BACKGROUND: The developmental outcomes and life course trajectories of young children with or at-risk for fetal alcohol spectrum disorders (FASD) can be optimized when individual and family needs are identified early and met with family-centered early intervention (EI) services. However, little is known about access to and quality of EI services with this high-needs population. METHOD: Twenty-five biological or adoptive parents of children with or at high risk for FASD, living in the greater area of Seattle, Washington participated in this qualitative study. Three focus groups were conducted using a semi-structured interview guide. Participants described their experience with EI, as well as other supports and challenges faced in their child's first three years of life. Interviews were audio recorded, transcribed verbatim and coded using phenomenological methods. Themes that were consistent across participant groups emerged from the data, as well as themes that showed differences among participant experiences. RESULTS: Common EI supports and needs between biological and adoptive parent groups were identified. In addition, perspectives and needs unique to each parent group were revealed. Themes were identified and organized into three categories: (1) child needs; (2) parent needs and priorities; and (3) EI capacity. When parents talked about their child's cognitive, physical, communication or adaptive development, they all discussed how EI was meeting those needs. In contrast, when parents expressed concern for their child's social-emotional development, a description of how EI was supporting these needs was missing from the conversation. Parents appreciated when EI providers were truthful, provided anticipatory guidance, and connected them with supports for their own social-emotional well-being. Yet there were unmet needs for respite care, and parents expressed that support for basic needs related to child or family survival was not consistently recognized as a top priority for families. This high-risk group of young children and their parents also encountered a multitude of transitions in their child's early years and later. Parents wanted more support navigating these transitions as they entered or moved through different systems of care. CONCLUSIONS: Parents appreciated and endorsed the importance of EI with its provision of individualized, family-centered supports and resources. Examination of the gaps and unmet needs that are common and distinct underscore the importance of an FASD-informed approach to EI. Study findings provide insight into areas for which EI enhancements could be developed in order to tailor supports for the complex needs of this diverse population of children and parents.
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Intervención Educativa Precoz , Trastornos del Espectro Alcohólico Fetal/rehabilitación , Accesibilidad a los Servicios de Salud , Padres , Calidad de la Atención de Salud , Adolescente , Adulto , Niño , Preescolar , Femenino , Grupos Focales , Humanos , Lactante , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Transferencia de Pacientes , Investigación Cualitativa , Cuidados Intermitentes , Apoyo Social , Washingtón , Adulto JovenRESUMEN
BACKGROUND: As clinicians strive to achieve consensus worldwide on how best to diagnose fetal alcohol spectrum disorders (FASD), the most recent FASD diagnostic systems show convergence and divergence. Applying these systems to a single clinical population illustrates the contrasts between them, but validation studies are ultimately required to identify the best system. METHODS: The 4-Digit-Code, Hoyme 2016, Canadian 2015 and Australian 2016 FASD diagnostic systems were applied to 1,392 patient records evaluated for FASD at the University of Washington. The diagnostic criteria and tools, the prevalence and concordance of diagnostic outcomes, and validity measures were compared between the systems. RESULTS: The proportion diagnosed with fetal alcohol syndrome (FAS) and FASD varied significantly (4-Digit-Code 2.1%, ≤79%; Hoyme 6.4%, 44%, Australian 1.8%, 29%; Canadian 1.8%, 16%). Eighty-two percent were diagnosed FASD by at least one system; only 11% by all four systems. Key factors contributing to discordance include: requiring high alcohol exposure; excluding growth deficiency; relaxing the facial criteria; requiring brain criteria that prevent diagnosis of infants/toddlers; and excluding moderate dysfunction from the spectrum. Primate research confirms moderate dysfunction (1-2 domains ≤-2 standard deviations) is the most prevalent outcome caused by PAE (FAS 5%, severe dysfunction 31%, moderate dysfunction 59%). Only the 4-Digit-Code replicated this diagnostic pattern. CONCLUSION: The needs of individuals with FASD are best met when diagnostic systems provide accurate, validated diagnoses across the lifespan, the full spectrum of outcome, the full continuum of alcohol exposure; and utilize diagnostic nomenclature that accurately reflects the association between outcome and alcohol exposure.
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Purpose Data from standardized caregiver questionnaires indicate that children with fetal alcohol spectrum disorders (FASDs) frequently exhibit atypical auditory behaviors, including reduced responsivity to spoken stimuli. Another body of evidence suggests that prenatal alcohol exposure may result in auditory dysfunction involving loss of audibility (i.e., hearing loss) and/or impaired processing of clearly audible, "suprathreshold" sounds necessary for sound-in-noise listening. Yet, the nexus between atypical auditory behavior and underlying auditory dysfunction in children with FASDs remains largely unexplored. Method To investigate atypical auditory behaviors in FASDs and explore their potential physiological bases, we examined clinical data from 325 children diagnosed with FASDs at the University of Washington using the FASD 4-Digit Diagnostic Code. Atypical behaviors reported on the "auditory filtering" domain of the Short Sensory Profile were assessed to document their prevalence across FASD diagnoses and explore their relationship to reported hearing loss and/or central nervous system measures of cognition, attention, and language function that may indicate suprathreshold processing deficits. Results Atypical auditory behavior was reported among 80% of children with FASDs, a prevalence that did not vary by FASD diagnostic severity or hearing status but was positively correlated with attention-deficit/hyperactivity disorder. In contrast, hearing loss was documented in the clinical records of 40% of children with fetal alcohol syndrome (FAS; a diagnosis on the fetal alcohol spectrum characterized by central nervous system dysfunction, facial dysmorphia, and growth deficiency), 16-fold more prevalent than for those with less severe FASDs (2.4%). Reported hearing loss was significantly associated with physical features characteristic of FAS. Conclusion Children with FAS but not other FASDs may be at a particular risk for hearing loss. However, listening difficulties in the absence of hearing loss-presumably related to suprathreshold processing deficits-are prevalent across the entire fetal alcohol spectrum. The nature and impact of both listening difficulties and hearing loss in FASDs warrant further investigation.
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Percepción Auditiva , Trastornos del Espectro Alcohólico Fetal/fisiopatología , Pérdida Auditiva/etiología , Niño , Preescolar , Femenino , Humanos , Masculino , Estudios RetrospectivosRESUMEN
AIMS: The purposes were to examine construct validity of the Motor Planning Maze Assessment (Maze) and three items from the Functional Gait Assessment (FGA) that were modified for children (pediatric modified FGA, pmFGA), by comparing performance of children with DCD and age matched peers with typical development (TD); the construct validity of total scores of the Dynamic Gait Index (DGI) and the FGA. METHODS: Twenty pairs of children with DCD and TD, age from 5 to 12 years, participated in this study. Children in both groups were tested on the Maze, pmFGA, DGI, and FGA. Paired t-tests and agreement tables were used to compare the motor performances between two groups. RESULTS: The DCD group showed higher summary scores in the Maze (p < 0.001) and demonstrated significantly fewer steps (p ≤ 0.001) while doing the pmFGA items than the TD group. However, the FGA quality scores demonstrated minimal differences between the two groups on all three items. Children with DCD showed significantly lower DGI and FGA total scores (p < 0.001) than the TD group. CONCLUSION: The Maze, DGI, and FGA tests are easily applied in clinical settings and can differentiate motor planning and gait coordination between children with DCD and with TD.
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Técnicas de Diagnóstico Neurológico/estadística & datos numéricos , Análisis de la Marcha/métodos , Trastornos de la Destreza Motora/diagnóstico , Niño , Preescolar , Evaluación de la Discapacidad , Femenino , Humanos , Masculino , Destreza Motora , Trastornos de la Destreza Motora/fisiopatología , Reproducibilidad de los ResultadosRESUMEN
BACKGROUND: Through play, children develop motor, cognitive, social, and other life skills. Play barriers can impede physical and psychosocial benefits. OBJECTIVES: We describe participation in active play, fundamental movement skills, play environment characteristics, and potential play barriers for school-aged children (6-12 years) who use lower extremity prostheses. STUDY DESIGN: Cross-sectional questionnaire study. METHODS: A questionnaire was developed and administered online to parents of children 6-12 years who use lower extremity prostheses. Questions focused on children's valued play activities, participation in active play, fundamental movement skills, body positions for play, and characteristics of play environments. RESULTS: Parents (n = 26) reported their children who use lower extremity prostheses participated in a range of activities including active play (e.g. playgrounds, swimming). Fundamental movement skill limitations were identified (e.g. walking long distances, running fast, hopping on one foot, and skipping). Mobility limitations with floor positions, movement transitions, and uneven or sloped surfaces were reported. Active play with equipment such as roller skating, climbing structures, and bicycling presented challenges. CONCLUSION: Parents of children who use lower extremity prostheses reported participation restrictions associated with mobility limitations, activity type, and built environment characteristics (e.g. surfaces and equipment). Challenges made it difficult for children who use lower extremity prostheses to keep up with peers in schools and communities. Clinical relevance Understanding potential barriers to participation in active play of children who use lower extremity prostheses may contribute to enhanced prosthetic design, rehabilitation strategies, universal design of play and built environments, and improved outcome measures ultimately enabling these children to participate fully in active play in diverse contexts.
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Miembros Artificiales , Conducta Infantil , Aptitud Física , Juego e Implementos de Juego , Encuestas y Cuestionarios , Niño , Estudios Transversales , Ejercicio Físico/fisiología , Femenino , Humanos , Extremidad Inferior/cirugía , Masculino , Limitación de la Movilidad , Medición de RiesgoRESUMEN
INTRODUCTION: While research highlights the benefits of early diagnosis and intervention for children with fetal alcohol spectrum disorders (FASD), there are limited data documenting effective interventions for Australian children living in remote communities. METHODS AND ANALYSIS: This self-controlled cluster randomised trial is evaluating the effectiveness of an 8-week Alert Program school curriculum for improving self-regulation and executive function in children living in remote Australian Aboriginal communities. Children in grades 1-6 attending any of the eight participating schools across the Fitzroy Valley in remote North-West Australia (N ≈ 363) were invited to participate. Each school was assigned to one of four clusters with clusters randomly assigned to receive the intervention at one of four time points. Clusters two, three and four had extended control conditions where students received regular schooling before later receiving the intervention. Trained classroom teachers delivered the Alert Program to students in discrete, weekly, 1-hour lessons. Student outcomes were assessed at three time points. For the intervention condition, data collection occurred 2 weeks immediately before and after the intervention, with a follow-up 8 weeks later. For control conditions in clusters two to four, the control data collection matched that of the data collection for the intervention condition in the preceding cluster. The primary outcome is change in self-regulation. FASD diagnoses will be determined via medical record review after the completion of data collection. The results will be analysed using generalised linear mixed modelling and reported in accordance with Consolidated Standards of Reporting Trials (CONSORT) guidelines. ETHICS AND DISSEMINATION: Ethical approval was obtained from the University of Western Australia (WA) (RA/4/1/7234), WA Aboriginal Health Ethics Committee (601) and WA Country Health Service (2015:04). The Kimberley Aboriginal Health Planning Forum Research Sub-Committee and WA Department of Education also provided approval. The results will be disseminated through peer-reviewed journals, conference presentations, the media and at forums. TRIAL REGISTRATION NUMBER: ACTRN12615000733572; Pre-results.
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Servicios de Salud del Niño/organización & administración , Función Ejecutiva , Trastornos del Espectro Alcohólico Fetal/rehabilitación , Servicios de Salud del Indígena/organización & administración , Autocontrol , Australia , Niño , Preescolar , Femenino , Humanos , Masculino , Nativos de Hawái y Otras Islas del Pacífico , Evaluación de Programas y Proyectos de Salud , Servicios de Salud Rural/organización & administración , Población Rural , Servicios de Salud Escolar/organización & administraciónRESUMEN
BACKGROUND: Risk of fetal alcohol spectrum disorder (FASD) is not based solely on the timing and level of prenatal alcohol exposure (PAE). The effects of teratogens can be modified by genetic differences in fetal susceptibility and resistance. This is best illustrated in twins. OBJECTIVE: To compare the prevalence and magnitude of pairwise discordance in FASD diagnoses across monozygotic twins, dizygotic twins, full-siblings, and half-siblings sharing a common birth mother. METHODS: Data from the Fetal Alcohol Syndrome Diagnostic & Prevention Network clinical database was used. Sibling pairs were matched on age and PAE, raised together, and diagnosed by the same University of Washington interdisciplinary team using the FASD 4-Digit Code. This design sought to assess and isolate the role of genetics on fetal vulnerability/resistance to the teratogenic effects of PAE by eliminating or minimizing pairwise discordance in PAE and other prenatal/postnatal risk factors. RESULTS: As genetic relatedness between siblings decreased from 100% to 50% to 50% to 25% across the four groups (9 monozygotic, 39 dizygotic, 27 full-sibling and 9 half-sibling pairs, respectively), the prevalence of pairwise discordance in FASD diagnoses increased from 0% to 44% to 59% to 78%. Despite virtually identical PAE, 4 pairs of dizygotic twins had FASD diagnoses at opposite ends of the fetal alcohol spectrum-Partial Fetal Alcohol Syndrome versus Neurobehavioral Disorder/Alcohol-Exposed. CONCLUSION: Despite virtually identical PAE, fetuses can experience vastly different FASD outcomes. Thus, to protect all fetuses, especially the most genetically vulnerable, the only safe amount to drink is none at all.
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The Americans With Disabilities Act (ADA) provides standards and guidance for accessibility and accommodations that remove barriers to facilitate community social participation for individuals with disabilities. However, ADA implementation does not yet fully address the diverse access needs of people with intellectual and developmental disabilities (IDD), who continue to face barriers to community social participation. This article explores the potential for occupational therapy practitioners to provide organization-level consultation as a means of maximizing community social participation among people with IDD. Case examples of occupational therapy practitioners working with community organizations are presented to illustrate organization-level consultation that addresses access needs across diverse community contexts. The relevance of supporting community social participation within the context of health equity is discussed, and key next steps, including developing population-based outcome measures, addressing reimbursement considerations, and developing best practices for organization-level consultation, are outlined.
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Discapacidades del Desarrollo , Personas con Discapacidad/legislación & jurisprudencia , Política de Salud/legislación & jurisprudencia , Discapacidad Intelectual , Terapia Ocupacional , Organizaciones , Derivación y Consulta , Participación Social , Accesibilidad a los Servicios de Salud , Disparidades en Atención de Salud , Humanos , Características de la ResidenciaRESUMEN
Students with intellectual and/or developmental disabilities (IDD) increasingly pursue postsecondary education (PSE). Navigating the hidden curriculum-including meeting prerequisites for PSE and employment, using support systems and community transportation, and carrying out adulthood expectations-is an area of challenge. This exploratory case study examined experiences of students with IDD attending a PSE program and stakeholder perspectives. Thirty-two participants (10 students with IDD, 5 parents or guardians, 4 college administrators, 8 college instructors, 4 occupational therapists, and a transition specialist) were interviewed. Conventional content analysis revealed navigating the hidden curriculum as a key theme and three subthemes: (1) adult-based system navigation, (2) persisting challenges with adaptive behaviors, and (3) disability awareness and disclosure. Limited awareness of disability and supports and services needed for a successful PSE outcome were contributing factors. Occupational therapists have the skills to support students with IDD in skill acquisition to successfully transition to and navigate PSE and the hidden curriculum.
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Educación de las Personas con Discapacidad Intelectual , Docentes , Terapeutas Ocupacionales , Padres , Estudiantes , Universidades , Adaptación Psicológica , Adulto , Anciano , Concienciación , Curriculum , Revelación , Empleo , Femenino , Humanos , Discapacidad Intelectual , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Habilidades Sociales , Adulto JovenRESUMEN
Federally qualified health centers (FQHCs) provide low- or no-cost primary care to medically underserved populations such as homeless or low-income people, migrant workers, and members of marginalized cultural groups. Occupational therapy services have the potential to help improve the health and functioning of FQHC patients. Using a FQHC serving American Indian/Alaska Native populations as a case example, we describe how occupational therapy is well suited to help meet the needs of medically underserved populations. We then examine options for integrating occupational therapy into this unique primary care setting, discuss related administrative and policy considerations, and propose possible solutions to identified barriers.