Demographic Assessment of Down Syndrome: A Systematic Review.

The objective of this study is to assess the evidence about the demographic transformation of the Down Syndrome population, with a specific focus on prenatal testing, and to identify sources frequently used for demographic assessment of Down Syndrome in the world. We reviewed existing studies on demographic transformations in the population with Down Syndrome, specifically birthrate indicators, under the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Statement. The searches were made in Medline (via EBSCO Host), Academic Search Complete (via EBSCO Host), PsycINFO (via EBSCO Host), Web of Science (Core Collection), Public Health Database (via ProQuest), and The Cochrane Library.

A Systematic Review of the Assessment of Support Needs in People with Intellectual and Developmental Disabilities.

An evaluation of support needs is fundamental to the provision of services to people with intellectual and developmental disabilities. Services should be organized by considering the support that people need to improve their quality of life and enforce their rights as citizens. This systematic review is conducted to analyze the rigor and usefulness of the available standardized tools for assessing support needs, as well as the uses of their results.

Current Trends in Telehealth Applications to Deliver Social Communication Interventions for Young Children with or at Risk for Autism Spectrum Disorder.

Purpose Of Review: Early, intensive, and high-quality interventions can often improve social communication outcomes for children with autism spectrum disorder (ASD). Many children experience barriers to intervention, resulting in significant delays to intervention onset or missed opportunities for intervention altogether. With constant advances in technology, the field is experiencing a rapid increase in investigation of telehealth applications to intervention delivery.

Differences in the support needs of children with developmental disabilities among groups of medical and behavioral needs.

Background/aims: Medical and behavioral needs are relevant in organizing and providing support strategies that improve the quality of life for children, along with their families. The present study aims to examine the impact of medical and behavioral needs on the need for support of children with disabilities.

Methods: Health and education professionals were interviewed using the Supports Intensity Scale-Children's version to estimate the support needs of 911 children and adolescents (5-16 years) with an intellectual disability, including 55.

The predictors of proxy- and self-reported quality of life among individuals with acquired brain injury.

Purpose: Acquired brain injury (ABI) diminishes quality of life (QoL) of affected individuals and their families. Fortunately, new multidimensional instruments such as the (CAVIDACE) scale are available. However, differences in self- and proxy-reported QoL remain unclear.

Comparative analysis of self-injurious behaviour topographies in young children with and without developmental delay.

Background: The present study presents post hoc analyses of specific topographies of self-injurious behaviour (SIB) exhibited by young children with developmental delay (DD) and children with typical development (TD). We conducted these analyses to better understand similarities and differences between the groups from a developmental perspective. No previous study has compared the prevalence, severity and co-occurrence of specific topographies of SIB in young children.

Delay to Early Intensive Behavioral Intervention and Educational Outcomes for a Medicaid-Enrolled Cohort of Children with Autism.

Increased prevalence of autism spectrum disorder (ASD) has underscored the need for early intervention services. Early Intensive Behavioral Intervention (EIBI) is among the most common evidence-based approaches, however, stakeholders report significant waitlists. The effects of these delays to intervention are unknown.

I Want to Play: Children With Cerebral Palsy Talk About Their Experiences on Barriers and Facilitators to Participation in Leisure Activities.

Purpose: To explore how children with cerebral palsy (CP) experience participation in leisure activities and to describe the environmental barriers and facilitators.

Methods: Sixteen children with cerebral palsy aged 7 to 17 years participated in 3 focus groups. Data were analyzed thematically by 3 researchers on the basis of the International Classification of Functioning, Disability and Health.

Predictors of Annual and Early Separations Among Direct Support Professionals: National Core Indicators Staff Stability Survey.

Direct support professionals (DSPs) provide a broad range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) that enables people to live, work, and participate in their communities. Despite the crucial importance in ensuring supports for community participation of people with IDD, high rates of annual turnover among DSPs in organizations that employ them have been documented for decades. This study utilizes National Core Indicators Staff Stability data from 2016 to examine the impact of organizational- and state-level factors related to DSP turnover, including annual DSP turnover and the percentage of DSPs who left their positions after less than 6 months.

Toward a Better "Person-Environment Fit" through Items Calibration of the SIS-C.

The Supports Intensity Scale-Children's Version (SIS-C) is the only available tool to assess extraordinary support needs for children and adolescents with intellectual disability. In past years, several works have proclaimed the need for its ongoing improvement as a measurement instrument. To contribute to this line of research, the goal of this work is to analyze the reliability of the SIS-C and its usefulness to distinguish between different levels of intensity of support needs.

Disparities in Documented Diagnoses of Autism Spectrum Disorder Based on Demographic, Individual, and Service Factors.

The objectives of our study were to (a) report how many children met an autism spectrum disorder (ASD) surveillance definition but had no clinical diagnosis of ASD in health or education records and (b) evaluate differences in demographic, individual, and service factors between children with and without a documented ASD diagnosis. ASD surveillance was conducted in selected areas of Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. Children were defined as having ASD if sufficient social and behavioral deficits and/or an ASD diagnosis were noted in health and/or education records.

Adaptation and validation of the self-report version of the scale for measuring quality of life in people with acquired brain injury (CAVIDACE).

Purpose: The disability and resulting dependence after acquired brain injury (ABI) significantly reduces quality of life (QoL), making the correct assessment of QoL important. However, the instruments currently used to assess QoL are either reductionist, including only health-related aspects, or, like the CAVIDACE scale, are based on multidimensional models but ignore the individual's perspective. Therefore, the purpose of this study is to validate the self-report version of the CAVIDACE scale.

Measuring support needs in children with motor disability: Validity and utility of the Supports Intensity Scale (SIS-C).

Background: It is unknown whether the Supports Intensity Scale-Children's version (SIS-C) is valid and useful to assess support needs for children with motor and intellectual disabilities.

Aims: (a) To assess the structural validity of the SIS-C using factor analyses in a sample of children with motor disabilities; and (b) to analyze the SIS-C's reliability and its discriminative capacity in children with different levels of motor function.

Methods And Procedures: A cross-sectional design was used to assess 210 children (aged 5-16 years).

Parsing Heterogeneity in Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder with Individual Connectome Mapping.

Traditional diagnostic systems for neurodevelopmental disorders define diagnostic categories that are heterogeneous in behavior and underlying neurobiological alterations. The goal of this study was to parse heterogeneity in a core executive function (EF), cognitive flexibility, in children with a range of abilities ( = 132; children with autism spectrum disorder, attention-deficit/hyperactivity disorder [ADHD], and typically developing children) using directed functional connectivity profiles derived from resting-state functional magnetic resonance imaging data. Brain regions activated in response to a cognitive flexibility task in adults were used to guide region-of-interest selection to estimate individual connectivity profiles in this study.

Assessing support needs in children with intellectual disability and motor impairments: measurement invariance and group differences.

Background: This study assessed the equivalence of the measurement of support needs between children with intellectual disability (ID) and children with intellectual and motor disabilities (IMD) and compared both groups in the different domains of support.

Method: The Supports Intensity Scale-Children's Version was used to assess the support needs of 713 children with ID and 286 children with IMD, mainly associated with cerebral palsy.

Results: The results supported measurement invariance between the group of ID and IMD, which allowed to conduct comparison between them.

Factors Influencing Low Prevalence of Neurodevelopmental Disabilities Among US Hispanic/Latino Children.

Objectives: Hispanic/Latino (H/L) children have lower prevalence of neurodevelopmental disabilities (NDD) than other groups. The explanations for this are complex, but may be related to nativity, language barriers, and lack of access to and utilization of healthcare. Previous research focused on how these factors affect children with NDD, but little research has jointly examined whether these factors predict NDD.

Examining measurement invariance and differences across groups in the support needs of children with and without intellectual disability.

Background: The purposes of this study were to empirically determine whether the support needs construct is generalizable across children with and without intellectual disability and to conduct cross-group comparisons to explore how extraordinary and non-extraordinary support needs differ in children.

Method: One thousand thirty-six children (814 with intellectual disability 222 without intellectual disability) were assessed using the SIS-C.

Results: The SIS-C achieved scalar invariance between children with and without intellectual disability.

Improving healthcare access for older adults with intellectual disability: What are the needs?

This qualitative study was carried out in Spain with the aim of identifying the changes that the health system should make to improve healthcare access for older adults with intellectual disability. Three hundred and sixty-nine family members and professionals expressed their opinion on how healthcare access could be improved. Participants responded to two open-ended questions included in a general survey about the health status of older individuals with intellectual disability.

Identifying Patterns of State Vocational Rehabilitation Performance in Serving Transition-Age Youth on the Autism Spectrum.

Background: Transition-age youth on the autism spectrum (TAY-ASD) face many challenges when attempting to find and keep employment. Vocational rehabilitation (VR) is a key public source of support for employment for people with disabilities in the United States, and TAY-ASD increasingly use VR services. However, rates of VR service utilization and employment outcomes are known to vary dramatically across states for these youth, for reasons that are not fully understood.

Fiscal Stewardship, Choice, and Control: The Context of Self-Directed Services for People With Intellectual and Developmental Disabilities (IDD) in the United States.

Self-directed home and community based services (HCBS) waiver services and supports for people with intellectual and developmental disabilities (IDD) have become a viable and widely used method of service provision in the United States. Grounded in theories of self-determination, previous literature on self-direction has suggested high satisfaction and positive outcomes for people who use self-directed programs as well as cost savings for state IDD service systems. This study explored the ways in which state IDD service administrators think about how self-direction may be used as a method of achieving cost savings while providing opportunities for people with IDD and their families to exercise choice and control.

Putting the Pieces Together: Perceptions of Longitudinal Wraparound, Systems of Care, and Positive Behavior Support Implementation.

Positive Behavior Support (PBS) was introduced to community-based providers in Kansas in 2012 in response to a federally funded initiative to reduce the placement of youth in psychiatric facilities. As core project activities concluded in 2016, researchers investigated the impact of this comprehensive PBS initiative on youth, families, mental health centers, and other stakeholders. This paper describes how qualitative interviews and focus groups were used to investigate the perceptions of families, advocates, and implementers involved in wraparound (WA), regional interagency collaboration, and the addition of PBS services.

Active Support Training, Staff Assistance, and Engagement of Individuals With Intellectual and Developmental Disabilities in the United States: Randomized Controlled Trial.

Two non-U.S. quasi-experimental studies reported Active Support training was associated with increased engagement in individuals with IDD, but no randomized controlled trials (RCTs) exist.

Investigating functional brain network integrity using a traditional and novel categorical scheme for neurodevelopmental disorders.

Background: Current diagnostic systems for neurodevelopmental disorders do not have clear links to underlying neurobiology, limiting their utility in identifying targeted treatments for individuals. Here, we aimed to investigate differences in functional brain network integrity between traditional diagnostic categories (autism spectrum disorder [ASD], attention-deficit/hyperactivity disorder [ADHD], typically developing [TD]) and carefully consider the impact of comorbid ASD and ADHD on functional brain network integrity in a sample adequately powered to detect large effects. We also assess the neurobiological separability of a novel, potential alternative categorical scheme based on behavioral measures of executive function.

Psychotropic Medication Use for Adults with Autism Spectrum Disorder who Receive Services and Supports Through Adult Developmental Disability Services in the United States.

Individuals with autism spectrum disorder (ASD) have higher rates of co-occurring diagnoses and use of psychotropic medication prescriptions than people with other developmental disabilities. Few studies have examined these trends in samples of people with intellectual and developmental disabilities (IDD) with and without ASD. Using a random sample of 11,947 adult IDD service users from 25 states, co-occurring diagnoses and psychotropic medication use were compared for those with and without ASD.

A new scale for measuring quality of life in acquired brain injury.

Purpose: A common and frequent consequence of an acquired brain injury (ABI) is the diminished quality of life (QoL) of affected people. Because the majority of existing QoL instruments assess health-related domains, new instruments that allow for the evaluation of the QoL from an integral perspective that considers the context and personal factors of the individual are warranted. Hence, the purpose of this study is to develop and validate an instrument with these characteristics.