Guidelines in supporting people with intellectual disabilities : it’s all about values

In a person-centered support system for people with intellectual disabilities, there should be an alignment between the wishes and goals of a person, his or her support needs, the support given, and his or her quality of life as outcome. Thus far, quite some research has been done on measuring support needs and measuring personal outcomes. In this article the focus is on the actual support to people with intellectual disabilities. It is argued that there should be an emphasis on 1) the application of evidence-based supports, 2) based on evidence-based measurement of support needs, 3) in which the outcomes are evidence-based assessed quality of life-related personal outcomes, 4) within a value-based framework, and 5) in a process of methodological sound Individual Supports Planning. A value-based model for evidence-based supports and interventions in a support methodology is presented

Assessing individual support needs to enhance personal outcomes

Education and human service organizations providing services to people with intellectual and closely related developmental disabilities are increasingly being impacted by the supports paradigm, the quality of life concept, and the evaluation of personal outcomes. In this article the authors discuss the relationship among these three areas, including examples that illustrate how assessed support needs data can be aligned with quality-of-life-related core domains so as to establish individualized support systems that enhance personal outcomes. The article concludes with a discussion of the implications for educators and habilitation professionals of integrating the supports paradigm, the quality of life concept, and the evaluation of personal outcomes

Uso de la escala de intensidad de apoyos en la práctica. Asignación de recursos y planificación de apoyos individuales basados en la escala de intensidad de apoyos

La organización holandesa Arduin proporciona servicios a personas con discapacidad intelectual. Recientemente se planteó pasar de servicios basados en instituciones a un enfoque de calidad de vida y apoyos comunitarios individualizados. Para ello, tomó la escala de intensidad de apoyos (SIS) de la American Association on Intellectual and Developmental Disabilities y elaboró un método dirigido a ayudar a las personas con discapacidad a formular de manera adecuada sus deseos y necesidades. El sistema pretende ser una parte esencial de la metodología de apoyos centrados en la persona: tras formular sus necesidades de refuerzos o mejoras, se desarrolla un plan individualizado y se asignan los recursos, cuya aplicación es posteriormente evaluada mediante indicadores de calidad de vida. Tras describir la experiencia y aportar datos, el autor trata de demostrar la utilidad de la escala SIS en la práctica de un proveedor de servicios

Un sistema de apoyos centrado en la persona. Mejoras en la calidad de vida a través de los apoyos

De acuerdo con este artículo, el paso de las definiciones de la calidad de vida al análisis del contexto, los factores personales y las interacciones entre entorno y sujeto han trasladado la metodología utilizada en la provisión de servicios a personas con discapacidad intelectual del paradigma del cuidado al del apoyo. Variar el objetivo y buscar la optimización de la vida de estas personas desarrollando planes individualizados implica una evaluación fundada en medidas subjetivas y objetivas. Numerosos estudios interculturales han validado ocho dimensiones básicas de la calidad de vida –bienestar emocional, relaciones interpersonales, bienestar material, desarrollo personal, bienestar físico, autodeterminación, inclusión social y derechos–, que se resumen en tres factores: independencia, participación social y bienestar. Según esta metodología, se realiza una primera entrevista para recavar datos sobre la situación actual e ideal de la persona. Esta información, junto a las opiniones de sus familiares, sirve para fijar los objetivos de esta persona y los apoyos necesarios para conseguirlos. Un plan individualizado de apoyos sirve para mejorar la atención centrada en la persona y de guía para el cambio favoreciendo, además, las mejoras en los aspectos organizativos

Autodeterminación para todos. La autodeterminación en Arduin

En la Fundación Arduin la emancipación y autodeterminación de las personas con discapacidad intelectual han sido adoptadas como principios fundamentales para obtener la mejor calidad de vida posible para los usuarios a los que se anima a evolucionar desde la dependencia a la autodeterminación adaptando, para ello, los servicios necesarios, es decir los apoyos deseados

Individual Support Plans: enhancing personal outcomes

For organizations providing supports to persons with intellectual disability it is their main task to enhance the quality of life of their clients. Individual Support Plans should be designed with this goal in mind. Consequently, important questions in writing an ISP are: 1) What does the person want?, and 2) Which support does the person need? The outcome should obviously be a good quality of life./nFurthermore we emphasize in our work the importance of evidence-based practices. Based on these starting points we propose the following guideliness for an ISP. An ISP should:/n–     Explore goals and personal perspectives: what does a person want in his life./n–     Explore what support a person needs and wants: which supports are important for and which are important to the person./n–     Formulate support strategies in answer to the personal goals, wants and needs./n–     Monitor in dialogue with the person the process of support./n–     Measure personal outcomes./n–     Comprise an ongoing system of finetuning and adjusting./n–     Use evidence based practices in doing so./n–     Be transparant and comprehensible for the person./nFollowing these guideliness we developed an internet based ISP in which the eight QOL dimensions provide the framework for developing support strategies, the dialogue with the client is build into the system of supports, and evidence based instruments are used to measure support needs and personal outcomes./n La mejora de la calidad de vida de los usuarios es la principal tarea de las organizaciones que prestan servicios de apoyo a las personas con discapacidad intelectual. Los planes individuales de apoyo (PIA) deben diseñarse teniendo en cuenta este objetivo. Por tanto, las cuestiones más importantes a las que debe prestarse atención cuando se redacta un PIA son: 1) ¿Qué quiere el usuario? y 2) ¿Qué apoyos necesita? Obviamente, lo que se busca es que el usuario goce de una buena calidad de vida./nAdemás, en este trabajo hacemos hincapié en la importancia de las prácticas basadas en la evidencia; y, sobre la base de estos dos puntos de partida, proponemos las siguientes directrices para la elaboración del PIA. En el PIA se debe:/n–     Analizar los objetivos y perspectivas del usuario (¿qué quiere conseguir en la vida?)./n–     Analizar qué apoyos el usuario quiere y necesita (¿qué apoyos son importantes desde su punto de vista y cuáles realmente necesita?)./n–     Formular estrategias de apoyo en función de los objetivos personales, los deseos y las necesidades del usuario./n–     Hacer un seguimiento de los procesos de apoyo en permanente diálogo y colaboración con el usuario./n–     Medir los resultados personales que se han conseguido./n–     Disponer de un sistema permanente para llevar a cabo los ajustes y adaptaciones que sean necesarios./n–     Recurrir a las prácticas basadas en la evidencia./n–     Ser claro y comprensible para el usuario./nCon estas directrices hemos desarrollado un PIA en Internet, en el cual las ocho dimensiones de calidad de vida conforman el marco teórico a partir del cual se elaboran las estrategias de apoyo. El diálogo con el usuario se integra en el sistema de apoyo y los instrumentos basados en la evidencia se utilizan para medir las necesidades de apoyo y los resultados personales obtenidos

A systems approach to social entrepreneurship

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Estimating the Cost-Effectiveness of Quality-Improving Interventions in Oral Anticoagulation Management within General Practice

AbstractObjectivesA clinical trial, “Belgian Improvement Study on Oral Anticoagulation Therapy (BISOAT),” significantly improved the quality after implementing four different quality-improving interventions in four randomly divided groups of general practitioners (GPs). The quality-improving interventions consisted of multifaceted education with or without feedback reports on their performance, international normalized ratio (INR) testing by the GP with a CoaguChek device or computer-assisted advice for adapting oral anticoagulation therapy. The quality improvement in INR control versus baseline was similar in the four groups. The aim of the current study was to calculate the cost-effectiveness and influencing factors of the four quality-improving interventions compared with usual care.MethodsActivity-based costing techniques with questionnaires were used to determine the global costs per patient per month in the different intervention groups. Effectiveness data were obtained from the BISOAT study. Cost-effectiveness was expressed as cost per additional day within a 0.5 range from INR target.ResultsThe one-time cost of multifaceted education was €49,997 for the whole study. Monthly continuous costs per intervention ranged between €37 and €54 per patient. Using the CoaguChek in combination with the multifaceted education was associated with net savings and quality improvement, hence dominated usual care. Sensitivity analyses showed improved cost-effectiveness with extended duration and with increased program size.ConclusionImplementation of the combination multifaceted education with the use of the CoaguChek is a cost-effective new organizational model of oral anticoagulation management in general practice

Carbohydrate supplementation during prolonged cycling exercise spares muscle glycogen but does not affect intramyocellular lipid use

Using contemporary stable-isotope methodology and fluorescence microscopy, we assessed the impact of carbohydrate supplementation on whole-body and fiber-type-specific intramyocellular triacylglycerol (IMTG) and glycogen use during prolonged endurance exercise. Ten endurance-trained male subjects were studied twice during 3 h of cycling at 63 ± 4% of maximal O2 uptake with either glucose ingestion (CHO trial; 0.7 g CHO kg−1 h−1) or without (CON placebo trial; water only). Continuous infusions with [U-13C] palmitate and [6,6-2H2] glucose were applied to quantify plasma free fatty acids (FFA) and glucose oxidation rates and to estimate intramyocellular lipid and glycogen use. Before and after exercise, muscle biopsy samples were taken to quantify fiber-type-specific IMTG and glycogen content. Plasma glucose rate of appearance (Ra) and carbohydrate oxidation rates were substantially greater in the CHO vs CON trial. Carbohydrate supplementation resulted in a lower muscle glycogen use during the first hour of exercise in the CHO vs CON trial, resulting in a 38 ± 19 and 57 ± 22% decreased utilization in type I and II muscle-fiber glycogen content, respectively. In the CHO trial, both plasma FFA Ra and subsequent plasma FFA concentrations were lower, resulting in a 34 ± 12% reduction in plasma FFA oxidation rates during exercise (P < 0.05). Carbohydrate intake did not augment IMTG utilization, as fluorescence microscopy revealed a 76 ± 21 and 78 ± 22% reduction in type I muscle-fiber lipid content in the CHO and CON trial, respectively. We conclude that carbohydrate supplementation during prolonged cycling exercise does not modulate IMTG use but spares muscle glycogen use during the initial stages of exercise in endurance-trained men