Patricia Navas

The concept of quality of life and its role in enhancing human rights in the field of intellectual disability.

BACKGROUND The changed societal views of persons with disabilities are reflected in the 2006 United Nations Convention on the Rights of Persons with Disabilities. However, what is not specified in the Convention is how to operationalise and measure the Articles composing the Convention, and how to use that information to further enhance the human rights of persons with disabilities. METHOD The authors analyse the relationships between eight core quality of life domains and the 34 Articles contained in the Convention. RESULTS There is a close relationship between the core quality of life domains and the 34 Articles contained in the Convention. Furthermore, the current status of these Articles can be evaluated through the assessment of indicators associated with the eight core quality of life domains. CONCLUSIONS Based on the assessment of these quality of life-related outcomes, three strategies can be used to enhance the human rights of persons with intellectual disability. These three are to employ person-centred planning, publish provider profiles and implement a system of support.

Measuring quality of life in people with intellectual and multiple disabilities: validation of the San Martín scale.

Although there are numerous quality of life instruments in the, field of intellectual disability, most of them are addressed to those, people with the highest levels of functioning, while only a few are, suitable for people with the lowest levels (i.e., people with profound, and severe intellectual disabilities, or people with intellectual and, developmental disabilities and other significant medical conditions or, disabilities). This study provides reliability and validity evidence of, the San Martín Scale, a 95-item Likert scale questionnaire that is, completed by a third-party respondent. The validation sample was composed, of 1770 people from Spain with intellectual and developmental, disabilities that showed extensive or pervasive support needs (8.7% had, mild intellectual disability, 28.25% moderate, 41.6% severe, and 21.4%, profound). The age of the participants ranged between 16 and 77 years old, (M=7.78; SD=12.32). The results suggested that the eight quality of, life domains assessed on the scale are reliable (Cronbachs alpha ranging, from .821 to .933). Confirmatory Factor Analyses provided construct, validity evidences related to the internal structure of the San Martín, Scale, and indicated that the eight first-order factor solution provided, the best fit to the data over unidimensional and hierarchical solutions. Implications of these findings and guidelines for further research are, discussed.

Factor structure of the construct of adaptive behavior in children with and without intellectual disability

Although the presence of significant limitations in adaptive behavior constitutes one of the three necessary criteria for diagnosing intellectual disability, adaptive behavior structure has always been the subject of considerable controversy among researchers. The main goal of this study is to extend previous research results that provide further support to a multidimensional structure of conceptual, social, and practical skills compared to the unidimensional structure. One-factor and 3-correlated factors models as measured by 15 observable indicators were analyzed by means of confirmatory factor analysis (CFA), as well as their relationships with one second-order factor (i.e., adaptive behavior). To that end, 388 children with and without intellectual disabilities were assessed with the Diagnostic Adaptive Behavior Scale (DABS). Results of CFA indicated that the 3 first-order factors solution provides the best fit to the data. Reliability and validity of the multidimensional model were also analyzed through different methods such as the composite reliability and the average variance extracted. Finally, implications of these findings and possible directions for future research are discussed.

The development and use of Provider Profiles at the organizational and systems level

While the use of quality of life-related personal outcomes has been broadly reported during the last decade, little attention has been paid to the use of such data as a basis for developing and using Provider Profiles at the organizational and systems level. This article illustrates a way in which these evidence-based outcomes may be used not only to improve clinical decisions, but also managerial and policy strategies. To that end, the quality of life of 11,624 social service recipients was assessed by means of the application of the GENCAT Scale, a questionnaire to assess quality of life according to the eight-domain model (Schalock & Verdugo, 2002). Data were analyzed at organizational and the systems level in order to develop Provider Profiles. Once implemented, these profiles can be used to compare individuals in different diagnostic groups, develop province-level performance standards, encourage continuous program improvement, and guide the development of evidence-based policies.

Diagnóstico y clasificación en discapacidad intelectual

El diagnostico de la discapacidad intelectual asi como los sistemas de clasificacion de la misma han constituido un tema de interes principal para todos aquellos que intentan comprender este fenomeno y acercarse un poco mas al complejo entramado de intervencion en este campo. El objetivo de este articulo consiste en realizar un pequeno recorrido sobre las implicaciones, peligros y beneficios de los sistemas de clasificacion en el campo de la discapacidad intelectual para finalmente abordar el enfoque multidimensional con el que los profesionales de la salud y los servicios se acercan actualmente a la misma.

Application of the Rasch rating scale model to the assessment of quality of life of persons with intellectual disability

Abstract Background Most instruments that assess quality of life have been validated by means of the classical test theory (CTT). However, CTT limitations have resulted in the development of alternative models, such as the Rasch rating scale model (RSM). The main goal of this paper is testing and improving the psychometric properties of the INTEGRAL Quality of Life Scale (i.e., fit statistics, person and item reliability coefficients) with RSM. Method The sample comprised 271 Spanish adults with intellectual disability. Results The results showed that the data fitted the model, point-biserial correlations were adequate, items showed precision, reliability of items (.98) and persons (.89) were adequate, and the response categories were suitable (thresholds were ordered). However, one item (“I feel excluded from society”) did not fit the model and a few items were too easy for participants to achieve. Conclusions Although it seems necessary to include more difficult items and to delete one, the INTEGRAL Scale is a useful instrument with evidence of validity.

The Diagnostic Adaptive Behavior Scale: Evaluating its diagnostic sensitivity and specificity

The Diagnostic Adaptive Behavior Scale (DABS) was constructed with items across three domains--conceptual, social, and practical adaptive skills--and normed on a representative sample of American individuals from 4 to 21 years of age. The DABS was developed to focus its assessment around the decision point for determining the presence or absence of significant limitations of adaptive behavior for the diagnosis of Intellectual Disability (ID). The purpose of this study, which was composed of 125 individuals with and 933 without an ID-related diagnosis, was to determine the ability of the DABS to correctly identify the individuals with and without ID (i.e., sensitivity and specificity). The results indicate that the DABS sensitivity coefficients ranged from 81% to 98%, specificity coefficients ranged from 89% to 91%, and that the Area Under the Receiver Operating Characteristic Curve were excellent or good. These results indicate that the DABS has very good levels of diagnostic efficiency.

Development of an instrument for diagnosing significant limitations in adaptive behavior in early childhood

Although adaptive behavior became a diagnostic criterion in the 5th edition of the American Association on Intellectual and Developmental Disabilities, AAIDD (Heber, 1959, 1961), there are no measures with adequate psychometric properties for diagnosing significant limitations in adaptive behavior according to the current conception of the construct. This fact has led to an excessive reliance on intellectual functioning measures. The goal of the present paper consists of presenting the development of the AAIDDs forthcoming Diagnostic Adaptive Behavior Scale (DABS) in Spain, and, specifically, it will be focused on one of its three forms: DABS Form 4-8 years old. The sample consisted of 388 people, aged 4-8 years old, with and without intellectual disabilities. The functioning of an initial pool of 168 items was analyzed under the assumptions of Item Response Theory models (IRT) with the aim to select those items around the cut-off point for determining significant limitations in adaptive behavior. A set of 72 items was selected (96 items were removed due to misfit, unsatisfying response category functioning, or low precision of measurement). The final version seems to be essentially unidimensional, shows good fit to the model, and represents an accurate precision of measurement around the cutoff point for diagnosing significant limitations in conceptual, social or practical skills.

Evaluación de la calidad de vida en personas mayores y con discapacidad: la Escala Fumat

Este articulo tiene como objetivo el desarrollo y la validacion de un instrumento especifico para valorar de un modo objetivo la calidad de vida de personas mayores y personas con discapacidad que acuden a algun tipo de servicio social. La escala se desarrollo siguiendo un proceso de tres pasos: revision de la literatura, elaboracion de un banco de items y evaluacion de los items seleccionados por un grupo de 15 expertos en terminos de idoneidad, importancia y observabilidad. La validacion del cuestionario se llevo a cabo en una muestra de 100 usuarios adultos de servicios proporcionados por Matia Fundazioa (San Sebastian). La fiabilidad se evaluo en terminos de consistencia interna (Alpha de Cronbach y correlacion entre dos mitades de Spearman-Brown) y estructura factorial (fiabilidad zeta y omega). La validez se evaluo en terminos de validez de contenido, validez discriminante, validez concurrente y validez de constructo. Los resultados obtenidos confirman la validez y fiabilidad de la Escala FUMAT para evaluar la calidad de vida objetiva de personas mayores y personas con discapacidad que son usuarias de servicios sociales.

Development and standardization of the diagnostic adaptive behavior scale: Application of item response theory to the assessment of adaptive behavior

The Diagnostic Adaptive Behavior Scale (DABS) was developed using item response theory (IRT) methods and was constructed to provide the most precise and valid adaptive behavior information at or near the cutoff point of making a decision regarding a diagnosis of intellectual disability. The DABS initial item pool consisted of 260 items. Using IRT modeling and a nationally representative standardization sample, the item set was reduced to 75 items that provide the most precise adaptive behavior information at the cutoff area determining the presence or not of significant adaptive behavior deficits across conceptual, social, and practical skills. The standardization of the DABS is described and discussed.