The Right to Sexuality, Reproductive Health, and Found a Family for People with Intellectual Disability: A Systematic Review.

Although sexuality, reproductive health, and starting a family are human rights that should be guaranteed for all citizens, they are still taboo issues for people with intellectual disability (ID), and even more so for women with ID. This paper systematically reviews the current qualitative and quantitative evidence on the rights of people with ID in regard to Articles 23 (right to home and family) and 25 (health, specifically sexual and reproductive health) of the Convention on the Rights of Persons with Disabilities (CRPD). A systematic review of the current literature, following PRISMA 2020, was carried out in ERIC, PsychInfo, Scopus, PubMed, ProQuest, and Web of Science. In all, 151 articles were included for review. The studies were categorized into six themes: attitudes, intimate relationships, sexual and reproductive health, sexuality and sex education, pregnancy, and parenthood. There are still many barriers that prevent people with ID from fully exercising their right to sexuality, reproductive health, and parenthood, most notably communicative and attitudinal barriers. These findings underline the need to continue advancing the rights of people with ID, relying on Schalock and Verdurgo's eight-dimensional quality of life model as the ideal conceptual framework for translating such abstract concepts into practice and policy.

Quality of Life and the International Convention on the Rights of Persons With Disabilities: Consensus Indicators for Assessment / Calidad de Vida y la Convención Internacional Sobre los Derechos delas Personas con Discapacidad: Indicadores Consensuados Para laEvaluación

Background: The quality of life construct provides an ideal conceptualframework for translating such abstract concepts as self-determination,equity, accessibility, and inclusion. Through consultation with expertraters, we sought to develop and validate a bank of indicators and items,based on the quality of life conceptual framework, to be used as a means ofevaluating and implementing the Articles of the Convention on the Rightsof Persons with Disabilities (CRPD). Method: Thirty-two experts in thefield of intellectual and developmental disabilities participated, ratingthe suitability, importance, and clarity of a bank of 296 items, as well asthe relevance of controlling for 70 sociodemographic variables. Results:After qualitative and quantitative analysis of the data, the final selectioncomprised 60 sociodemographic variables and 153 items that scored highlyon all criteria and produced an excellent level of agreement between theexperts. Conclusions: This bank of items and set of sociodemographicvariables constitute the pilot version of a CRPD assessment and monitoringinstrument with sufficient evidence of content validity, which may be usefulin developing evidence-based practices and in detecting rights violations.

Antecedentes: el constructo de calidad de vida proporcionaun marco conceptual ideal para traducir conceptos abstractos comoautodeterminación, equidad, accesibilidad o inclusión. Mediante una consultaa expertos se pretende desarrollar y validar un banco de indicadores e ítemsbasados en el marco conceptual de la calidad de vida que pueda ser utilizadopara evaluar e implementar los derechos recogidos en la Convención sobre losDerechos de las Personas con Discapacidad (CDPD). Método: participaron32 expertos en el campo de las discapacidades intelectuales y del desarrollocalificando la idoneidad, importancia y claridad de un banco de 296ítems, así como la relevancia de controlar 70 variables sociodemográficas.Resultados: tras el análisis cualitativo y cuantitativo de los datos, se llegóa una solución consensuada de 60 variables sociodemográficas y 153 ítemsque puntuaron alto en todos los criterios y obtuvieron un excelente grado deacuerdo entre los expertos. Conclusiones: este banco de ítems y conjunto devariables sociodemográficas constituye la versión piloto de un instrumentode evaluación y seguimiento de la CDPD con suficientes evidencias devalidez basadas en el contenido, que puede ser útil para desarrollar prácticasbasadas en la evidencia y para detectar violaciones de derechos.

Addressing Quality of Life of Children With Autism Spectrum Disorder and Intellectual Disability.

Despite the advances on the assessment of quality of life, this concept is barely studied and is riddled with important limitations for those with autism spectrum disorder (ASD). This article is aimed at validating a questionnaire to assess quality of life of children with ASD and intellectual disability (ID). Based on the KidsLife Scale, geared toward people with ID, the most reliable items for those with ASD were selected. Study participants were 420 persons, from 4 to 21 years old. Results indicated that the KidsLife-ASD Scale measured eight intercorrelated domains, had good reliability, and exhibited adequate evidences of validity. KidsLife-ASD emerges as a helpful tool to guide person-centered planning addressed at improving quality of life.