Consent to care of persons with intellectual disability in Quebec: from vulnerability to capability / Consentimiento para el cuidado de las personas con discapacidad intelectual en Quebec: desde la vulnerabilidad hasta la capacidad

Abstract: Persons with an intellectual disability (ID) who interact with the Quebec health and social services system are faced with major decisions regarding the care they are offered. As consent to care derives from the fundamental right of all persons to personal inviolability and to autonomous decision making, they therefore have the right to accept or refuse any and all health and psychosocial care proposed. However, as free and informed consent to care must be given by an able person, the situation becomes somewhat more complicated whereas persons with ID are concerned. This article presents reflections on the challenges and issues relative to these persons' consent to health and psychosocial care.

Resumen: Las personas con discapacidad intelectual (ID) que interactúan con el sistema de salud y los servicios sociales de Quebec se enfrentan a decisiones importantes sobre la atención que se les brinda. Dado que el consentimiento a la atención se deriva del derecho fundamental de todas las personas a la integridad personal y a la toma de decisiones autónomas, éstas tienen el derecho de aceptar o rechazar cualquier atención de salud y psicosocial que se les proponga. Sin embargo, como el consentimiento libre e informado a la atención debe ser dado por una persona apta, la situación se vuelve más complicada en las personas con ID. Este artículo presenta reflexiones sobre los desafíos y temas relativos al consentimiento de estas personas hacia la salud y la atención psicosocial.

Interventions to promote physical activity for adults with intellectual disabilities / Intervenciones para promover la actividad física para adultos con discapacidad intelectual

Abstract: Objective: To describe interventions designed to promote physical activity for adults with intellectual disabilities and the effects on overall physical activity levels and on health outcomes. Materials and methods: A systematic review of eight databases until January 31, 2015 identified 383 citations. The inclusion criteria were: a) the study sample consisted of adults with intellectual disabilities, b) the study implemented an intervention to initiate, increase, or maintain physical activity, and c) quantitative or qualitative data were used to report the effectiveness of the intervention. Six articles from the 383 citations met this criterion. Results: Three studies resulted in significant increases in physical activity behaviour; however well-controlled trials designed to improve weight status by increasing physical activity did not produce significant effects. Conclusion: Overall, the results indicate that interventions to increase physical activity should simultaneously target the individual with intellectual disability as well as their proximal environment over a sustained period of time.

Resumen: Objetivo: Describir las intervenciones diseñadas para promover la actividad física para adultos con discapacidad intelectual y los efectos en los niveles de actividad física en general y en los resultados de salud. Material y métodos: Una revisión sistemática de ocho bases de datos hasta el 31 de enero de 2015 identificó 383 citas. Los criterios de inclusión fueron: a) los participantes del estudio fueron adultos con discapacidad intelectual; b) el estudio implementó una intervención para iniciar, aumentar o mantener la actividad física; c) se usaron datos cuantitativos o cualitativos para informar la efectividad de la intervención. Seis artículos de 383 cumplieron con los criterios. Resultados: Tres estudios resultaron en aumentos significativos en conductas de actividad física; sin embargo, los ensayos controlados diseñados para mejorar el peso corporal al aumentar la actividad física no produjeron efectos significativos. Conclusión: En general, los resultados indican que las intervenciones para aumentar la actividad física deben dirigirse simultáneamente al individuo con discapacidad intelectual, así como su entorno próximo durante un periodo de tiempo sostenido.

Interventions to promote physical activity for youth with intellectual disabilities / Intervenciones para promover la actividad física para jóvenes con discapacidad intelectual

Abstract: Objective: To describe interventions designed to promote physical activity for youth with intellectual disabilities. Materials and methods: A systematic review of nine databases until January 31, 2015 identified 213 citations. The inclusion criteria were: a) the study sample consisted of youth with intellectual disabilities, b) the study implemented an intervention to initiate, increase, or maintain physical activity, and c) quantitative or qualitative data were used to report the effectiveness of the intervention. Eleven articles from the 213 citations met this criterion. Results: Nine studies reported significant increases in physical activity behavior. Conclusions: Conclusions cannot be made regarding intervention components that impacted outcome variables, if the observed effects were specifically due to the intervention or if interventions could be maintained long-term. To advance the knowledge base in this area, a concerted effort should be made to increase rigor in study conceptualization and research design.

Resumen: Objetivo: Describir las intervenciones diseñadas para promover la actividad física para jóvenes con discapacidad intelectual. Material y métodos: Una revisión sistemática de nueve bases de datos hasta el 31 de enero de 2015 identificó 213 citas. Los criterios de inclusión fueron: a) la muestra del estudio consistió en jóvenes con discapacidad intelectual, b) el estudio implementado fue una intervención para iniciar, aumentar o mantener la actividad física y datos c) cuantitativos o cualitativos se utilizaron para informar la efectividad de la intervención. Once artículos de 213 citas cumplen este criterio. Resultados. Nueve estudios informaron aumentos significativos en el comportamiento de la actividad física. Conclusión: No se pueden establecer conclusiones con respecto a los componentes de intervención variables de resultado, considerando si los efectos observados fueron específicamente debido a la intervención o intervenciones podrían mantenerse a largo plazo. Para avanzar en la base de conocimientos en esta área, se necesita un esfuerzo concertado para aumentar el rigor en el estudio unívoco.

Atividades lúdicas no atendimento multi e interdisciplinar para crianças com deficiência / Leisure activities in multi and interdisciplinary care for children with disabilities / Actividades lúdicas en la atención multi e interdisciplinaria para niños con discapacidad

O objetivo da pesquisa foi analisar as atividades lúdicas utilizadas, pela equipe multi e inter-disciplinar, na reabilitação de crianças com deficiência em uma instituição de saúde estadual de Santa Catarina. Os dados foram coletados a partir de entrevista semiestruturada e de obser-vações sistemáticas e analisados pela técnica de análise de conteúdo. Foram identificados co-mo potenciais desdobramentos lúdicos: brinquedos, jogos e brincadeiras, englobando regras explícitas ou implícitas, bem como suas características. Notou-se que as relações estabeleci-das se mostraram imprescindíveis para a concretização dos atendimentos e dos objetivos tera-pêuticos.

The objective of this research was to analyze the ludic activities used, by the multi and inter-disciplinary team, in the rehabilitation of children with disabilities in a health state institution in Santa Catarina. To collect data, semi-structured interviews and systematic observations were used. Data analysis occurred through technical content analysis. It was identified as po-tential ludic developments: toys, games and child?s play that involved explicit or implicit rules and their characteristics. It was noticed that the relations established were crucial to the concretization of the work and the therapeutic objectives.

El objetivo de la investigación fue analizar las actividades lúdicas utilizadas, por el equipo multidisciplinario e interdisciplinario, en la rehabilitación de niños con deficiencia en una institución de salud estatal de Santa Catarina. Los datos fueron colectados a partir de entrevis-ta semiestructurada y observaciones sistemáticas y, analizados por la técnica análisis de con-tenido. Fueron identificados como potenciales desdoblamientos lúdicos: juguetes, juegos y recreaciones, englobando las reglas explícitas o implícitas, así como sus características. Se observó que las relaciones establecidas se mostraron imprescindibles para la concretización de los atendimientos y de los objetivos terapéuticos.

Atenção à saúde ocular de crianças com alterações no desenvolvimento em serviços de intervenção precoce: barreiras e facilitadores / Eye health attention of children with developmental disorders in early intervention services: barriers and facilitators

RESUMO Objetivo: Identificar fatores que influenciam na detecção precoce de deficiência visual e o início da intervenção precoce de crianças com alterações no desenvolvimento. Métodos: O estudo constituiu-se de levantamento, exploratório e descritivo, que contou com a aplicação de questionários com representantes institucionais, profissionais da equipe dos serviços de intervenção precoce e mães ou cuidadores das crianças atendidas. Os dados receberam tratamento estatístico através dos softwares Sistema de Análise Estatística SAS 9.3, Wolfram Mathematica e Microsoft Excel.A amostra constituiu-se de 434 sujeitos (19 representantes institucionais, 142 profissionais dos serviços e 273 mães/cuidadores das crianças atendidas). Resultados: A análise dos resultados revelou valores estatísticos de p-valor=0,0119 para a realização do teste do olhinho no que se refere ao início da intervenção precoce. A mãe recebe orientação quanto ao desenvolvimento da visão que obteve valores de p-valor=0,0106 para início da intervenção oportuna e valores de p-valor=0,0061 para primeira consulta ao oftalmologista. Conclusão: Realizar o teste do olhinho constituiu-se fator facilitador para o início da intervenção precoce e ter uma deficiência exclusivamente visual e frequentar instituição privada como barreira.A entrada tardia em serviço de intervenção precoce afeta negativamente a idade da primeira consulta oftalmológica. A mãe recebe orientação quanto ao desenvolvimento da visão que revelou-se fator facilitador para a primeira consulta ao oftalmologista e para início da intervenção oportuna. O campo da saúde ocular constitui-se demanda da saúde pública e requer ações e programas educativos direcionados aos familiares, profissionais e gestores institucionais.

ABSTRACT Objective: To identify factors that influence on the early detection of visual impairment and in early intervention onset for children with developmental disorders. Methods: The study consisted of a exploratory and descriptive survey, which included the use of questionnaires with institutional representatives, professional team of early intervention and mothers or caregivers of children served in these services. The data received statistical analysis through software SAS Statistical Analysis System 9.3, Wolfram Mathematica and Microsoft Excel. The sample consisted of 434 subjects (19 institutional representatives, 142 professionals of the early intervention services and 273 mothers/ caregivers of children served). Results: The results showed statistical values of p=0.0119 for the realization of eye test with regard to the beginning of early intervention. The mother receive guidance on the development of vision obtained values of p-value=0.0106 for early intervention start and values of p=0.0061 for the first visit to the ophtalmologist. Conclusion: Realise the eye test constitutes as a facilitating factor for the onset of early intervention and have an exclusively visual impairment and attend private institution as a barrier. Late entry into early intervention service adversely affects the age of first ophthalmologic consultation.The mother receive guidance on the development of vision showed as a facilitating factor for the first visit to the ophtalmologist and start of timely intervention.The field of eye health constitutes as public health demand and requires attention to actions and educational programs directed to families, professionals and institutional managers who provide services to children.

Intervención neuropsicológica en un caso de retardo mental asociado a síndrome de Down / Neuropsychological Rehabilitation on mental retardation associated with Down's syndrome

Dentro de la población afectada de retraso mental, el síndrome de Down (SD) constituyen uno de los grupos más estudiados y es una de las causas genéticas más comunes, ocurriendo con gran frecuencia. Esta condición es el resultado de una anormalidad de los cromosomas, esta desviación en el desarrollo de las células resulta en la producción de 47 cromosomas en lugar de 46 que se consideran normales. El cromosoma adicional cambia totalmente el desarrollo ordenado del cuerpo y cerebro, produciendo alteraciones evidentes tanto físicas como cognitivas que afectan la capacidad adaptativa. El objetivo de este artículo es presentar el caso de una paciente con SD y mostrar los resultados de la aplicación de un programa de intervención neuropsicológica centrado en el fortalecimiento del factor primario, como eje para facilitar el funcionamiento sistémico. Se presenta la valoración previa a la intervención, el contenido del programa de intervención con los ejemplos de ejecuciones de la paciente, una valoración posterior y un análisis comparativo. La discusión se centra en la importancia de la identificación del mecanismo neurofisiológico primario que desorganiza la actividad, como eje fundamental para lograr efectos positivos en actividades de tipo voluntario mediante el lenguaje como regulador...

Within the affected population in mental retardation, Down syndrome (DS) is one of the most studied and is one of the most common genetic causes, occurring with great frequency. This condition is the result of an abnormality of chromosomes, a deviation in the development of cells results in production of 47 chromosomes instead of 46 which are considered normal. The extra chromosome changes the orderly development of the body and brain, causing both physical and obvious alterations that affect cognitive adaptive capacity. The aim of this paper is to present the case of a patient with SD and display the results of the application of a neuropsychological intervention program focused on strengthening the primary factor, as an axis to facilitate systemic functioning. It comes pre assessment, the content of the intervention program with examples of executions of the patient, after a review and comparative analysis. The discussion focuses on the importance of identifying the primary neurophysiological mechanism that disrupts the activity, as the linchpin for achieving positive effects on activities of a volunteer through language as a regulator...

Trastornos del desarrollo intelectual en América Latina: un marco para establecer las prioridades políticas de investigación y atención / Intellectual development disorders in Latin America: a framework for setting policy priorities for research and care

Los trastornos del desarrollo intelectual (TDI) son un grupo de alteraciones del desarrollo caracterizadas por una notable limitación de las funciones cognitivas, trastornos del aprendizaje y de las habilidades y conductas adaptativas. Anteriormente agrupados bajo el término discapacidad intelectual, constituyen un problema poco estudiado y cuantificado en América Latina. Los afectados están ausentes en las políticas públicas y no se benefician de las estrategias gubernamentales de desarrollo social y reducción de la pobreza. En este artículo se aporta una visión crítica de los TDI y se describe una nueva taxonomía. Además, se propone reconocerlos como problema de salud pública, promover la profesionalización de la atención, y sugerir una agenda de investigación y acción regional. En América Latina no hay consenso sobre los criterios diagnósticos de los TDI. Pocos programas de rehabilitación cubren una proporción importante de las personas que los padecen, no se ofrecen servicios basados en la evidencia científica y las directrices de atención no se han evaluado. Los manuales de diagnóstico psiquiátrico conceden más importancia a la identificación de los TDI graves, favorecen su subregistro y clasificaciones erróneas. Su estudio no se ha priorizado desde las perspectivas jurídica, de las ciencias sociales y de la salud pública. Por ello escasean las pruebas científicas sobre estos trastornos. Faltan competencias específicas y profesionalización para el cuidado de estas personas y es indispensable realizar intervenciones de prevención, rehabilitación, integración comunitaria e inclusión laboral.

Intellectual development disorders (IDDs) are a set of development disorders characterized by significantly limited cognitive functioning, learning disorders, and disorders related to adaptive skills and behavior. Previously grouped under the term "intellectual disability," this problem has not been widely studied or quantified in Latin America. Those affected are absent from public policy and do not benefit from government social development and poverty reduction strategies. This article offers a critical look at IDDs and describes a new taxonomy; it also proposes recognizing IDDs as a public health issue and promoting the professionalization of care, and suggests an agenda for research and regional action. In Latin America there is no consensus on the diagnostic criteria for IDDs. A small number of rehabilitation programs cover a significant proportion of the people who suffer from IDDs, evidence-based services are not offered, and health care guidelines have not been evaluated. Manuals on psychiatric diagnosis focus heavily on identifying serious IDDs and contribute to underreporting and erroneous classification. The study of these disorders has not been a legal, social science, or public health priority, resulting in a dearth of scientific evidence on them. Specific competencies and professionalization of care for these persons are needed, and interventions must be carried out with a view to prevention, rehabilitation, community integration, and inclusion in the work force.

Ensayo sobre la importancia de la educación sexual en personas con déficit intelectual: reflexiones desde la terapia ocupacional / Essay on the importance of sex education in people with intellectual deficit: reflections from the occupational therapy

En el presente ensayo se analiza y reflexiona sobre la importancia de la educación sexual en personas con déficit intelectual desde la terapia ocupacional, ya que sólo cuando se valida y justifica el por qué y para qué, se puede planificar el cómo y dónde intervenir. Para ello, se consideran las particularidades de este grupo y se analizan, desde el dominio de la terapia ocupacional (AOTA, 2008), el concepto de sexualidad formulado por la Organización Mundial de la Salud – OMS (2006), la necesidad y el impacto en sus procesos de integración social, así como algunas reflexiones bioéticas en torno al tema. Bajo esta lógica de análisis teórico y reflexivo, es que surge la idea de considerar que la integración social implica la necesidad de maximizar la independencia y autonomía de la persona con déficit intelectual, también en su dimensión sexual, cuya vivencia y expresión se realiza cotidianamente. Por tanto, su educación deber ser una labor centrada en la persona y realizada de manera conjunta con su familia y el equipo multidisciplinario. En base a esto último, se concluye que no es necesario ser un experto en el tema para ofrecer la asesoría necesaria, por lo que los terapeutas ocupacionales deben formar parte de estos equipos, ya que poseen las herramientas necesarias.

The following essay analyzes and reflects on the importance of sex education in people with intellectual deficit from occupational therapy, as only when the why and the what for are validated and justified, it is possible to plan on how and where to intervene. In order to carry it out, the peculiarities of this group are considered as well as analyzed from the occupational therapy domain (AOTA, 2008), the concept of sexuality formulated by the World Health Organization - WHO (2006), the need and impact in their social integration processes as well as some bioethical reflections on the subject matter. Under this reflective and theoretical logic analysis it emerges the idea of considering that social integration implies the need of maximizing the independence and autonomy of persons with intellectual deficit as well as their sexual dimension which expression and experience are daily performed. Therefore, his/her education must be a person-centered work and it also must be accomplished together with his/her family and the multidisciplinary team. Based on the latter, it is concluded that it is not necessary being an expert in the field to provide the essential advice, and then occupational therapists should be part of these teams, as they have the necessary tools.

El programa de atención psiquiátrica dirigido a enfermos mentales sin hogar / The mental health unit for the homeless mentally ill

El presente artículo tiene como objetivo describir un programa de salud mental innovador que desde mayo de 2003 se viene realizando en la ciudad de Madrid. El objetivo del mismo es atender, acudiendo a su entorno, a las personas sin hogar que padecen enfermedades mentales graves y servir de puente hacia los servicios sociosanitarios de la red general a los que normalmente no tiene acceso. Se describen los modelos teóricos para esta atención (outreach, tratamiento comunitario asertivo y modelo de recuperación) y el trabajo diario que se realiza; así como, las dificultades y barreras que se enfrentan en un trabajo de estas características.

The aim of this article is to describe an innovative mental health unit running in Madrid city since May 2003. The main purposes of this unit is to provide sociosanitary attention, going to their own enviroment- the streets-, to all those homeless persons suffering severe mental disorders. This unit provide a transitional care and engagment to mainstream social and sanitary services that usually they can't reach. It's described the theoretical models sustaining this work (outreach, Assertive Community treatment and Recovery) and also the team's daily practices. As well we described some of the challenges and barriers to face working in this particular job.

A best practice in education and support services for independent living of intellectually disabled youth and adults in Mexico: [review]

This article describes a best practice in the field of intellectual disability, a program for independent living offered by the Center for Integral Training and Development (CADI per its abbreviation in Spanish) for people with intellectual disability in Mexico. A detailed description of an effective program that fosters autonomy, social inclusion and high quality of life in people with intellectual disability is presented. The program encompasses four areas: a) a therapeutic academic area that teaches applied living skills; b) development of social skills; c) development of vocational skills, and d) skills for independent living. The program is divided into three levels: a) initiation to independent living, where clients develop basic abilities for autonomy, b) community integration and social independence, which provides clients with the skills necessary for social inclusion and economic independence, and c) practical and psychological support, which offers counseling for resolving psychological issues and enables subjects to maintain their autonomy.

Este artículo describe una "mejor práctica" en la capacitación para el logro de vida independiente, inclusión social y alta calidad de vida en personas con discapacidad intelectual. Se describe en detalle del programa ofrecido por el Centro de Capacitación y Desarrollo Integral (CADI), en México. Dicho programa tiene cuatro áreas: 1) área académico-terapéutica para el desarrollo de destrezas prácticas para la vida independiente; 2) área para el desarrollo personal y de habilidades sociales; 3) área para el desarrollo de habilidades laborales; y 4) área para el desarrollo de habilidades aplicadas a la vida independiente. El programa se divide en tres niveles: a) iniciación a la vida independiente, donde se desarrollan las habilidades básicas necesarias para el logro de su autonomía; b) integración comunitaria e independencia social que provee a los clientes las destrezas necesarias para su inclusión social e independencia económica; c) apoyo práctico y psicológico que ofrece asesoría para resolver problemas psicológicos y el logro de su autonomía.

Education of persons with intellectual disabilities in India: [review]

Historically in India, persons with disabilities enjoyed co-existence, though at different times, the treatment and attitudes were at variance. Out of all the types of disabilities, an intellectual disability poses greater challenges than the other types. The families of persons with intellectual disabilities do also have needs different from others, which cannot be segregated from the needs of children with intellectual disability. Specific legislations have been put in place to ensure empowerment of persons with disabilities. Through Rehabilitation Council of India, human resource development programs are standardized. The National Institute for the Mentally Handicapped has developed many service models and contributed toward human resource development and research. Many Non-Government Organizations have started special education and vocational training programs. National Trust, a statutory body, supports the individuals and families and seeks to protect those individuals having no parents. Sarva Shiksha Abhiyan (Education for All), has special focus on education of children with disabilities. Vocational training centres have an obligation to develop eco-centric and commercially viable jobs. As per the National Policy, the Government of India envisages that every child with a disability should have access to appropriate preschool, primary and secondary level education by 2020.

Históricamente en India las personas con discapacidades han disfrutado siempre de la coexistencia, si bien a veces el tratamiento y las actitudes podían contrastar. De entre todos los tipos de discapacidad, la intelectual es la que presenta los mayores desafíos. Las familias de las personas con discapacidad intelectual tienen asimismo necesidades distintas de las demás, inseparables de las necesidades de los niños con discapacidad intelectual. Se ha implementado legislación específica para asegurar el apoderamiento de las personas con discapacidades. Los programas de desarrollo de recursos humanos se normalizan a través del Consejo de Rehabilitación de India. El Instituto Nacional para los Discapacitados Mentales ha desarrollado diversos modelos de servicios y contribuido a la investigación y desarrollo de recursos humanos. Muchas Organizaciones No Gubernamentales han iniciado programas de educación especial y de entrenamiento vocacional. El Fideicomiso Nacional, una institución oficial, apoya a los individuos y a las familias y protege a los huérfanos. Sarva Shiksha Abhiyan (Educación para Todos), se enfoca particularmente en la educación de los niños con discapacidades. Los centros de entrenamiento vocacional tienen la obligación de crear trabajo ecocéntrico y comercialmente viable. En cuanto a la política nacional, el Gobierno de la India se propone que todo niño con discapacidad deberá tener acceso a la educación preescolar, primaria y secundaria para 2020.

Developing a self care training program for mentally retarded children in Shebeen El-Kom

The aim of this study was to develop a self care training program to teach mentally retarded children skills that are necessary for their own adaptation. These skills included drawing, playing with clay, using scissors, washing hands, washing face, brushing teeth, feeding self [making a sandwich] and wearing shoes. The sample included 25 mentally retarded children with IQ levels between 50-66 in preparatory A and B. For teaching the previously mentioned skills, the task analysis technique was applied as follows: The researcher practiced as a model and verbally explained his technique, the researcher physically and verbally guided each child through each of the task analysis steps and each child was guided to perform self care skills independently. The results of the study showed the effectiveness of task analysis techniques, modeling and positive reinforcement on improving children's self care skills

The UPANAYAN' early intervention programme.

The Upanayan programme is a product of Indchem Research and Development Laboratory, a scientific association recognized by Government of India, Ministry of Science and Technology. The objective of the project was to develop a computer assisted programme for the training of persons with mental retardation. The project was executed by an inter disciplinary team of experts. The focus of the training programme is the mother who is the intervening agent. The programme, developed in the first phase of the project, is an expert system for the infant stimulation and early intervention process for children below 2 years of age with the disability. The system comprises of: (i) a development check list of skills for assessment and programming, (ii) a profile to record the observations, (iii) intervention strategies in the form of activities to acquire all the skills in the check list. The programme is designed for the Indian socio-economic conditions and is available in the form of a printed manual, and also as a computer software. The two can be used independently of each other. The programme has been translated into Hindi, Tamil, Malayalam and Marathi. With this programme as the basis, a centre for early intervention, Madhuram Narayanan Centre for Exceptional Children--was set up in Madras about 3 years back. Presently 210 children are receiving training there. The Centre has evolved intervention strategies based on parental involvement, with salutary effect on the parents as well as on the children.

handicapped child: current concepts in management and rehabilitation

Handicapped children are permanently impaired such that developmental potential is limited. Manifestations of handicap are varied, often multiple and include a wide range of body systems. The disability process needs to be viewed as a "human condition" involving bio-psycho-social determinants and continuing the traditional module of illness to the points of impairment, disability and handicap. Defining these processes is essential in order to outline strategies of successful rehabilitative management. The role of a Child Developmental Institute for Neuro-Developmental-Behavioural Disorders is a valuable comprehensive centre of evaluation and multidisciplinary rehabilitation. In addition parental support and alliance in the therapeutic services play major roles. Institutional care sometimes becomes indicated