Support Needs of Children with Autism Spectrum Disorders: Implications for Their Assessment.

The construct of support needs has become a key aspect for the diagnostics, classification, and interventional management of autism spectrum disorders (ASDs). However, instruments specifically designed to assess support needs in this population are not available. Currently, the Supports Intensity Scale for Children (SIS-C), which could be administered to assess students with any type of intellectual disability (ID), is the only valid tool able to assess support needs in Spain. Our aim was to verify whether the SIS-C is useful for assessing the support needs of students with ASD, regardless of whether or not they present ID. The participants were subdivided into two groups. One group included students with ASD and ID (n = 248), and the other comprised participants with ASD without an ID (n = 44). The results of the two groups were compared with those reported in the original validation sample of the SIS-C, which involved participants with ID without ASD (n = 566). The results showed that this scale could be useful for assessing support needs in the three subgroups, but it appeared that different standardized norms based on the characteristics of each specific population would be appropriate.

Reading Lessons Planning With Students With Intellectual and Developmental Disabilities in Mind: Needs-Based Assessment Proposal.

This study addresses the need to reinforce the reading learning of students with intellectual and developmental disabilities (IDD) in general education classrooms. A standardized way of assessing support needs in reading (SNr) from the teachers' perspective is proposed. The objectives were (i) to develop an instrument and evaluate its properties and (ii) to preliminarily assess the support needs in reading of students with IDD. Participants were 86 Chilean elementary school teachers who responded about the support needs of their own students. The instrument assesses three dimensions (i.e., representation, engagement, and action and expression). Analyses showed excellent preliminary evidence of validity and reliability. Preliminarily identified support needs suggest that students need more support in representation. Practical and research implications are discussed.

Development and Validation of Standardized Quality of Life Measures for Persons with IDD.

The implications of the individual quality of life (QoL) model of Schalock and Verdugo have made it the most cited QoL model in the field of disability. The QoL model is understood as a conceptual and applied framework for action that allows the materialization of the rights of persons with disabilities through the multidimensional assessment of these persons using QoL indicators, and the development of actions guided by these values and supported by evidence. The purpose of this work is to present the foundations of this model and offer a step-by-step guide to developing standardized QoL assessment instruments and providing evidence that supports their use to implement the model in practice. This paper explores relevant topics such as: (a) the need to identify critical population groups and contexts; (b) the identification of QoL indicators for said groups and contexts; (c) the development of items focused on the assessment of personal outcomes; (d) provision to the items of validity evidence based on content and pilot measure design and (e) validation process to gather evidence that supports the uses of the instrument. Last, a framework that allows using the evidence on personal outcomes as disaggregated and aggregated data at different levels of the social system is presented, thus highlighting the role of the model as a change agent regarding individuals, organizations and schools, and public policy.

Impact of COVID-19 on the burden of care of families of people with intellectual and developmental disabilities.

AIM: This study analysed the impact that COVID-19 and the response measures implemented by the Spanish Government have had on families of individuals with intellectual and developmental disabilities. METHOD: Data on 323 family members (M = 52.3 years old; SD = 10.5) were collected through an online survey, which was focused on analysing difficulties experienced and service provision during lockdown. RESULTS: Many families (66.3%) have seen their level of stress increased during lockdown because of, among other reasons, a greater burden of care. Difficulties were associated with the closure and changes in disability-related services. Families of people with extensive support needs have generally experienced greater difficulties. CONCLUSION: Support services should have been considered essential services during lockdown. The failure to receive support has resulted in excessive burden on families, who had to assume a multitude of roles to support their family member with intellectual and developmental disability.

Operationalisation of quality of life for students with intellectual and developmental disabilities to improve their inclusion.

BACKGROUND: Quality of life (QoL) is regarded as a framework to enhance inclusive education outcomes in different domains for all students, especially for those with intellectual and developmental disabilities (IDD). Assessment tools are needed to implement this framework. Although there is a long trajectory of QoL assessment in people with IDD, we identify a lack of instruments for students with IDD who attend to general education contexts. AIMS: The goal of this study is to produce a pool of items in order to develop a field-test version of a QoL instrument for this target group. METHODS: 14 educational professionals participated in a four-round Delphi study, assessing the content of the items proposed according to four criteria (suitability, importance, observability and sensitivity). RESULTS: The results of this study provided evidence of content validity regarding the pool of items that will be included in a field-test version. CONCLUSIONS: The results obtained are important for the development of a QoL assessment tool to improve the inclusion of students with IDD in general education settings.

Longitudinal study of quality of life in acquired brain injury: A self- and proxy-report evaluation / Estudio longitudinal de la calidad de vida en daño cerebral adquirido: autoinforme e informe de otros

After an acquired brain injury (ABI), the person remains with several impairments and disabilities that cause a decrease in his/her quality of life (QoL), which could change over time. The objective of the study was to analyse the evolution patterns of QoL in a sample of persons with ABI for one-year as well as the differences in proxy- and self-report versions of a QoL instrument. Method: The sample comprised 402 persons with ABI with ages ranging between 18 and 91 years, whom 36.20% had had the accident recently (i.e., three years or less). Patients, professionals and relatives responded at three evaluation points to the CAVIDACE scale, an ABI-specific QoL tool. Results: ANOVAs showed an improvement in QoL in the two follow-ups; the improvement was especially significant in the period between baseline and six months. The respondent factor did not interact with the evaluation time, but significant differences were found between respondents, with scores of patients higher than that for proxies. Finally, the QoL’s evolution interacts with the time elapsed since injury, showing significant improvements in the most recent group (i.e., three years or less). Conclusions: QoL must be considered from the earliest moments after ABI to obtain more significant improvements. (AU)

Después del daño cerebral adquirido (DCA), la persona permanece con secuelas y discapacidades severas que pueden causar una disminución de su calidad de vida (CV) variable a lo largo del tiempo. El objetivo de este estudio es analizar los cambios en la CV a lo largo de un año, así como las diferencias entre las versiones autoinforme y heteroinforme de un instrumento de CV. Método: La muestra estuvo compuesta por 402 personas con DCA, con edades entre 18 y 91 años, de quiénes el 36,20% había tenido el accidente recientemente (tres años o menos). Pacientes, profesionales y familiares respondieron en los tres momentos de evaluación a la escala CAVIDACE, un instrumento específico para DCA. Resultados: Los ANOVAs mostraron una mejoría en muchas de las dimensiones de CV en ambos seguimientos, especialmente significativa entre la línea base y los seis meses. Los pacientes puntuaron más alto que el resto de evaluadores, pero este factor no mostró interacción con el momento de evaluación. Finalmente, la evolución de la CV interactuó con el tiempo transcurrido desde el DCA, encontrándose mejorías en el grupo con menor recorrido. Conclusiones: La CV debe ser tenida en cuenta desde los primeros momentos tras el DCA para obtener mejorías más significativas. (AU)

Longitudinal study of quality of life in acquired brain injury: A self- and proxy-report evaluation.

After an acquired brain injury (ABI), the person remains with several impairments and disabilities that cause a decrease in his/her quality of life (QoL), which could change over time. The objective of the study was to analyse the evolution patterns of QoL in a sample of persons with ABI for one-year as well as the differences in proxy- and self-report versions of a QoL instrument. METHOD: The sample comprised 402 persons with ABI with ages ranging between 18 and 91 years, whom 36.20% had had the accident recently (i.e., three years or less). Patients, professionals and relatives responded at three evaluation points to the CAVIDACE scale, an ABI-specific QoL tool. RESULTS: ANOVAs showed an improvement in QoL in the two follow-ups; the improvement was especially significant in the period between baseline and six months. The respondent factor did not interact with the evaluation time, but significant differences were found between respondents, with scores of patients higher than that for proxies. Finally, the QoL's evolution interacts with the time elapsed since injury, showing significant improvements in the most recent group (i.e., three years or less). CONCLUSIONS: QoL must be considered from the earliest moments after ABI to obtain more significant improvements.

Después del daño cerebral adquirido (DCA), la persona permanece con secuelas y discapacidades severas que pueden causar una disminución de su calidad de vida (CV) variable a lo largo del tiempo. El objetivo de este estudio es analizar los cambios en la CV a lo largo de un año, así como las diferencias entre las versiones autoinforme y heteroinforme de un instrumento de CV. Método: La muestra estuvo compuesta por 402 personas con DCA, con edades entre 18 y 91 años, de quiénes el 36,20% había tenido el accidente recientemente (tres años o menos). Pacientes, profesionales y familiares respondieron en los tres momentos de evaluación a la escala CAVIDACE, un instrumento específico para DCA. Resultados: Los ANOVAs mostraron una mejoría en muchas de las dimensiones de CV en ambos seguimientos, especialmente significativa entre la línea base y los seis meses. Los pacientes puntuaron más alto que el resto de evaluadores, pero este factor no mostró interacción con el momento de evaluación. Finalmente, la evolución de la CV interactuó con el tiempo transcurrido desde el DCA, encontrándose mejorías en el grupo con menor recorrido. Conclusiones: La CV debe ser tenida en cuenta desde los primeros momentos tras el DCA para obtener mejorías más significativas.

Examining the Suitability of the List of Indicators Describing Age-Related Typical Support Needs.

The list of indicators is a form of training material used for the Supports Intensity Scale-Children's version (SIS-C). It is aimed at helping interviewers distinguishing between extraordinary and age-related typical support needs in children with intellectual and developmental disabilities (IDD) when implementing the SIS-C, and thus improve supports planning. The aim of this study is to adapt and test the list of indicators' content validity and rating scale's functioning in Spain. A total of 222 general education teachers reported their agreement with each indicator description using a 5-point rating scale. A total of 353 of 366 indicators showed evidence of content validity, whereas analyses on the rating scale highlighted the necessity of subsuming one of the scale categories within another. The need for developing research-based training materials to develop training programs on the use of the SIS-C to support decision-making concerning supports planning with students with IDD, the relevance of using the latest methodological approaches available when required, and future lines of research are discussed.

Predictive Factors of Self-Reported Quality of Life in Acquired Brain Injury: One-Year Follow-Up.

Background: The sequelae and disabilities that follow an acquired brain injury (ABI) may negatively affect quality of life (QoL). The main objective of the study is to describe the QoL after an ABI and identify the predictors of a better QoL. Methods: Prospective cohort study with follow-up measurement after one-year. The sample comprised 203 adults with ABIs (64% male) aged 18-86 years (M = 53.01, SD = 14.44). Stroke was the main etiology of the injury (55.7%), followed by a TBI (32.8%), and the average time since injury was 8 years (M = 8.25, SD = 7.83, range = 0.5-47.5). Patients assessed their QoL through the scale Calidad de Vida en Daño Cerebral (CAVIDACE self-reported version; "quality of life in brain injury" in English), an ABI-specific tool based on the eight-domain QoL model. Other variables measured were: depression, self-awareness, community integration, resilience, and social support at baseline and one-year follow-up. Results: The studied factors showed few significant changes over time. The analyses showed statistically significant differences in QoL scores in several sociodemographic (age, civil status, education, legal capacity, and dependency), injury-related (time, location, and comorbidity), rehabilitation, and personal-social variables (self-awareness, depression, social support, resilience, and community integration). The levels of dependency, depression, and satisfaction with social support were independent predictors of the total QoL score one-year follow-up. Conclusions: QoL after ABI depends on multiple elements that must be considered. There are factors such as satisfaction with social support, depression, community integration, and resilience that must be monitored throughout the rehabilitation process.

Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective.

BACKGROUND: Individuals with intellectual and developmental disabilities (IDD) represent a particularly vulnerable group to the threats posed by COVID-19. However, they have not yet been given a voice on how their living conditions have been affected by COVID-19. AIMS: This study aims to report the impact on people with IDD of COVID-19 and the response measures applied in Spain during the lockdown. METHOD: Data on 582 individuals with IDD were collected through a survey. Seven open questions were included to capture the perspectives of people with IDD on COVID-19 and its consequences. Content analysis was performed to identify themes and categories across participant responses. Chi-square tests were used to analyze the relationship between reporting a specific category and participants' characteristics. RESULTS: Supports have been conditioned by the living context. People living in specific settings had fewer natural supports, while those living with their family relied heavily on it. Participants also lacked supports considered necessary. It is worth stressing that persons with IDD have also provided support to others. CONCLUSIONS: Although people with IDD have generally received the assistance they need during the lockdown, it must be ensured that appropriate supports are provided regardless of the context in which they live.

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 55.32% with an additional disability. For data analysis, a model for measuring support needs was specified, consisting of seven support needs factors and three method factors. In estimating the model, four groups of medical and behavioral needs were considered. The factor scores' means of the groups were compared through t-tests. RESULTS: Medical and behavioral needs had an impact on overall support needs. Differences were found in all support domains for medical needs. The greatest influence of behavioral needs was found in the Social and School participation areas but was indistinguishable between the mild and moderate levels of needs. CONCLUSIONS: Medical and behavioral needs greatly affect the need for support in a child's daily life, so they need to be considered a priority for support services. The importance of standardized assessments is emphasized to help develop support strategies.

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. To address this, 814 children and adolescents with intellectual disability (M = 11.13 years; SD = 3.41) were assessed using the SIS-C Spanish version. Item response theory analyses were conducted to estimate latent scores and assess measurement quality along the support needs continuum. The SIS-C items showed good overall discrimination and information values, and none showed problems that required their removal or modification. However, all the scales composing the SIS-C showed problems in discerning high levels of intensity of support needs, especially for children and adolescents with severe/profound intellectual disability. This ceiling effect may be an obstacle for both research and practice involving the SIS-C. Implications for research and practice are discussed, and future lines of research for improving the SIS-C are provided.

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). Among them, 88% had an intellectual disability and 84% had cerebral palsy, with variations in mobility (Gross Motor Function Classification System; level V: 56.19%), handling of objects (Manual Ability Classification System; level V: 38.09%), and communicating (Communication Function Classification System; level V: 42.86%). OUTCOMES AND RESULTS: The model with seven support needs factors and three method factors showed the best fit. The support needs model was reliable and indicated high convergent validity. However, the SIS-C scores showed a strong ceiling effect in children with more significant limitations in gross and fine motor functions. CONCLUSIONS AND IMPLICATIONS: The seven-dimensional model of support needs could be replicated in children with motor disabilities. However, the usefulness of SIS-C is limited in discriminating between children with greater restrictions in mobility and handling of objects.

Predictive factors of quality of life in acquired brain injury.

The sequelae and the disability and dependence that follow an acquired brain injury (ABI) may result in a significant reduction in the quality of life (QoL) of those affected. The objective was to assess the QoL of a sample of Spanish patients with an ABI and analyze the influence of certain sociodemographic and injury-related variables on their QoL. METHOD: The sample comprised 421 adults (60% male; M age = 53.12; SD = 14.87). Professionals and relatives assessed the patients' QoL through the CAVIDACE scale, an ABI-specific tool based on the eight-domain QoL model. RESULTS: Univariate analyses showed statistically significant differences in the QoL scores in several sociodemographic (age, civil status, education level, prior employment status, type of home, level of supports, loss of legal capacity, recognized dependence, and degree of dependence) and injury-related (time since the injury, location of the injury, and presence of post-traumatic amnesia) variables. The multiple linear regression showed that loss of legal capacity, time since the injury, prior employment status, location of the injury, and degree of dependence were significant QoL predictors. CONCLUSIONS: These findings provide knowledge for the development of programs aimed at reducing the negative impact of ABI on QoL.

ANTECEDENTES/OBJETIVO: Las secuelas, discapacidad y dependencia que siguen al daño cerebral adquirido (DCA) pueden resultar en una reducción significativa en la calidad de vida (CV) de los afectados. El objetivo fue evaluar la CV de una muestra española con DCA y analizar la influencia de variables sociodemográficas y relacionadas con la lesión en su CV. Método: La muestra comprendió 421 adultos (60% hombre; M edad = 53,12; DT = 14,87). Profesionales y familiares evaluaron la CV de los pacientes a través de la escala CAVIDACE, una herramienta específica para DCA basada en el modelo de CV de ocho dimensiones. Resultados: Los análisis univariantes mostraron diferencias estadísticamente significativas en las puntuaciones de CV en variables sociodemográficas (edad, estado civil, nivel educativo, situación de empleo previa, tipo de hogar, nivel de apoyos, incapacidad legal, situación de dependencia reconocida y su nivel) y relacionadas con la lesión (tiempo desde la lesión, localización de la lesión y presencia de amnesia postraumática). El análisis de regresión múltiple mostró la incapacidad legal, el tiempo desde la lesión, la situación de empleo previa, la localización de la lesión y el nivel de dependencia como predictores significativos de CV. Conclusiones: Estos hallazgos proporcionan conocimiento para el desarrollo de programas dirigidos a reducir el impacto negativo del DCA en la CV.

Predictive factors of quality of life in acquired brain injury / Factores predictores de calidad de vida en adultos con daño cerebral adquirido

Background/Objective: The sequelae and the disability and dependence that follow an acquired brain injury (ABI) may result in a significant reduction in the quality of life (QoL) of those affected. The objective was to assess the QoL of a sample of Spanish patients with an ABI and analyze the influence of certain sociodemographic and injury-related variables on their QoL. Method: The sample comprised 421 adults (60% male; Mage = 53.12; SD = 14.87). Professionals and relatives assessed the patients’ QoL through the CAVIDACE scale, an ABI-specific tool based on the eight-domain QoL model. Results: Univariate analyses showed statistically significant differences in the QoL scores in several sociodemographic (age, civil status, education level, prior employment status, type of home, level of supports, loss of legal capacity, recognized dependence, and degree of dependence) and injury-related (time since the injury, location of the injury, and presence of post-traumatic amnesia) variables. The multiple linear regression showed that loss of legal capacity, time since the injury, prior employment status, location of the injury, and degree of dependence were significant QoL predictors. Conclusions: These findings provide knowledge for the development of programs aimed at reducing the negative impact of ABI on QoL

Antecedentes/Objetivo: Las secuelas, discapacidad y dependencia que siguen al daño cerebral adquirido (DCA) pueden resultar en una reducción significativa en la calidad de vida (CV) de los afectados. El objetivo fue evaluar la CV de una muestra española con DCA y analizar la influencia de variables sociodemográficas y relacionadas con la lesión en su CV. Método: La muestra comprendió 421 adultos (60% hombre; Medad = 53,12; DT = 14,87). Profesionales y familiares evaluaron la CV de los pacientes a través de la escala CAVIDACE, una herramienta específica para DCA basada en el modelo de CV de ocho dimensiones. Resultados: Los análisis univariantes mostraron diferencias estadísticamente significativas en las puntuaciones de CV en variables sociodemográficas (edad, estado civil, nivel educativo, situación de empleo previa, tipo de hogar, nivel de apoyos, incapacidad legal, situación de dependencia reconocida y su nivel) y relacionadas con la lesión (tiempo desde la lesión, localización de la lesión y presencia de amnesia postraumática). El análisis de regresión múltiple mostró la incapacidad legal, el tiempo desde la lesión, la situación de empleo previa, la localización de la lesión y el nivel de dependencia como predictores significativos de CV. Conclusiones: Estos hallazgos proporcionan conocimiento para el desarrollo de programas dirigidos a reducir el impacto negativo del DCA en la CV

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. Cross-group comparisons revealed differences in variances, in correlations between factors and significant latent mean differences for all factors. CONCLUSION: Results show that the support needs construct is generalizable to children with and without intellectual disability and that there are no qualitative differences in how they show their support needs, so typically developing children can be used as a reference group to explore differences between extraordinary and non-extraordinary support needs. Conceptual and practical implications are discussed, and future lines of research are provided.

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. METHODS: The CAVIDACE scale is a new 64-item specific instrument to assess QoL in people with ABI based on a third-person perspective. The validation sample comprises 421 adults with ABI, with ages ranging from 17 to 90 years (M = 53.12; SD = 14.87). The scale was completed by 97 professionals and 58 family members. Validity evidence based on the internal structure of the scale was provided through confirmatory factor analyses. Reliability was analyzed in terms of internal consistency and inter-rater reliability. RESULTS: The results supported the internal structure of the scale, based on the theoretical and assessment framework in which QoL is composed of eight intercorrelated first-order domains (CFI = 0.890, RMSEA = 0.065, SRMR = 0.071). The internal consistency was good or excellent for the eight domains (ordinal alpha ranging from 0.77 to 0.93). The inter-rater reliability was very high (0.97). CONCLUSIONS: The CAVIDACE scale is found to be a specific instrument with excellent psychometric properties that is helpful for the assessment of QoL in people with ABI, both in clinical practice and for research purposes.