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Individualized funding interventions to improve health and social care outcomes for people with a disability

Additional Info

  • Authors: Padraic Fleming, Sinead McGilloway, Marian Hernon, Mairead Furlong, Siobhain O’Doherty, Fiona Keogh, Tim Stainton
  • Published date: 2019-01-25
  • Coordinating group(s): Disability
  • Type of document: Review, Plain language summary
  • Title: Individualized funding interventions to improve health and social care outcomes for people with a disability
  • Library Image: Library Image
  • See the full review: https://onlinelibrary.wiley.com/doi/10.4073/csr.2019.3
  • Records available in: English, Spanish
  • English:

    PLAIN LANGUAGE SUMMARY

    Individualised funding has positive effects on health and social care outcomes

    Individualised funding provides personal budgets for people with disabilities, to increase independence and quality of life. The approach has consistently positive effects on overall satisfaction, with some evidence also of improvements in quality of life and sense of security. There may also be fewer adverse effects. Despite implementation challenges, recipients generally prefer this intervention to traditional supports.

    What is this review about?

    Individualised funding is an umbrella term for disability supports funded on an individual basis. It aims to facilitate self-direction, empowerment, independence and self-determination. This review examines the effects and experiences of individualised funding.

    What is the aim of this review?

    This Campbell systematic review examines the effects of individualised funding on a range of health and social care outcomes. It also presents evidence on the experiences of people with a disability, their paid and unpaid supports and implementation successes and challenges from the perspective of both funding and support organisations.

    What are the main findings of this review?

    This study is a review of 73 studies of individualised funding for people with disabilities. These include four quantitative studies, 66 qualitative and three based on a mixed-methods design. The data refer to a 24-year period from 1992 to 2016, with data for 14,000 people. Studies were carried out in Europe, the US, Canada and Australia.

    What studies are included?

    Overall, the evidence suggests positive effects of individualised funding with respect to quality of life, client satisfaction and safety. There may also be fewer adverse effects. There is less evidence of impact for physical functioning, unmet need and cost effectiveness. The review finds no differences between approaches for the Adult Social Care Outcomes Toolkit (ASCOT), self-perceived health and community participation.

    Recipients particularly value: flexibility, improved self-image and self-belief; more value for money; community integration; freedom to choose ‘who supports you; ‘social opportunities’; and needs-led support. Many people chose individualised funding due to previous negative experiences of traditional, segregated, group-orientated supports.

    Successful implementation is supported by strong, trusting and collaborative relationships in their support network with both paid and unpaid individuals. This facilitates processes such as information sourcing, staff recruitment, network building and support with administrative and management tasks. These relationships are strengthened by financial recognition for family and friends, appropriate rates of pay, a shift in power from agencies to the individual or avoidance of paternalistic behaviour.

    Challenges include long delays in accessing and receiving funds, which are compounded by overly complex and bureaucratic processes. There can be a general lack of clarity (e.g. allowable budget use) and inconsistent approaches to delivery as well as unmet information needs. Hidden costs or administrative charges can be a source of considerable concern and stress.

    Staff mention involvement of local support organisations, availability of a support network for the person with a disability and timely relevant training as factors supporting implementation. Staff also highlight logistical challenges in support needs in an individualised way including, for example, responding to individual expectations, and socio-demographic differences.

    What do the findings of this review mean?

    This review provides an up-to-date and in-depth synthesis of the available evidence over 25 years. It shows that there are benefits of the individualised funding model. This finding suggests that practitioners and funders should consider moving away from scepticism, towards opportunity and enthusiasm. Policy makers need to be aware of the set-up and transitionary costs involved. Investment in education and training will facilitate deeper understanding of individualised funding and the mechanisms for successful implementation.

    Future studies should incorporate longer follow-ups at multiple points over a longer period. The authors of the review encourage mixed-methods approaches in further systematic reviews in the field of health and social care, to provide a more holistic assessment of the effectiveness and impact of complex ‘real-world’ interventions.

    How up-to-date is this review?

    The review authors searched for studies up to the end of 2016. This Campbell systematic review was published in January 2019.

  • Spanish:

    RESUMEN EN LENGUAJE SENCILLO

    El financiamiento individualizado tiene efectos positivos en los resultados de salud y asistencia social

    El financiamiento individualizado provee un presupuesto personal a las personas con discapacidades para aumentar su independencia y calidad de vida. Este enfoque tiene efectos positivos en la satisfacción general, y parece mejorar la calidad de vida y la sensación de seguridad. Puede haber incluso menos efectos adversos. A pesar de los desafíos de implementación, los receptores generalmente prefieren este tipo de intervención sobre los apoyos tradicionales.

    ¿Qué estudió la revisión?

    El financiamiento individualizado es un término genérico para los métodos de apoyo a la discapacidad que son financiados de forma individual. Su objetivo es facilitar la autodirección, el empoderamiento, la independencia y la autodeterminación. Esta revisión examina los efectos y experiencias del financiamiento individualizado.

    ¿Cuál es el objetivo de esta revisión?

    Esta revisión sistemática Campbell examina los efectos del financiamiento individualizado en la salud y los resultados de asistencia social. También presenta evidencia con base en las experiencias de personas con discapacidades, los mecanismos de apoyo remunerados y no remunerados, y los aprendizajes y desafíos de la implementación desde la perspectiva de las organizaciones, tanto de financiamiento como de apoyo.

    ¿Qué estudios se incluyen?

    Este estudio es una revisión de 73 investigaciones de financiamiento individualizado para personas con discapacidades. Esto incluye, cuatro estudios cuantitativos, 66 cualitativos y tres basados en un diseño de métodos combinados. La información engloba un período de 24 años, desde 1992 a 2016, con información de 14,000 personas. Los estudios se llevaron a cabo en Europa, Estados Unidos, Canadá y Australia.

    ¿Cuáles son los principales hallazgos de esta revisión?

    En general, la evidencia sugiere que existen efectos positivos del financiamiento individualizado con respecto a la calidad de vida, la satisfacción del cliente y la seguridad. Puede haber también efectos adversos menores.

    Existe menos evidencia acerca del impacto por funcionamiento físico, las necesidades insatisfechas y la eficiencia de costos. La revisión no encuentra diferencias entre los enfoques por Adult Social Care Outcomes Toolkit (ASCOT), la autopercepción de la salud y la participación de la comunidad.

    Los receptores valoran particularmente: la flexibilidad, la mejora en su percepción de sí mismos y su autoconfianza; una mayor rentabilidad de su dinero; integración en la comunidad; la libertad para elegir ‘quién te apoya’; ‘oportunidades sociales’; y el apoyo orientado hacia las necesidades.

    Muchas personas escogieron el financiamiento individualizado debido a experiencias negativas anteriores con métodos de apoyo tradicionales, segregados y orientados a grupos.

    La implementación exitosa está respaldada por relaciones sólidas, confiables y colaborativas dentro sus redes de apoyo, tanto con individuos que reciben remuneración, como aquellos que no. Esto facilita procesos tales como la búsqueda de información, la contratación de personal, la generación de redes y el apoyo con tareas administrativas y de gestión. Estas relaciones se fortalecen con el reconocimiento financiero para familias y amigos, las tarifas de pago apropiadas, la transferencia del poder desde las agencias hacia los individuos o al evitar comportamientos paternalistas.

    Los desafíos incluyen largas esperas para acceder o recibir los fondos, lo cual se suma a un proceso muy complejo y burocrático. Existe poca claridad en general (ej.: usos adecuados del presupuesto) y métodos inconsistentes para la entrega, al igual que necesidades de información insatisfechas. Los costos adicionales o cargos administrativos pueden ser una fuente considerable de estrés y preocupación.

    Entre los factores que respaldan la implementación, el personal señala la participación de organizaciones locales, la disponibilidad de una red de apoyo para la persona con discapacidad, y la formación relevante y oportuna. El equipo también destaca los desafíos logísticos en las necesidades de apoyo de una manera individualizada que incluye, por ejemplo, responder a las expectativas individuales y las diferencias sociodemográficas.

    ¿Qué significan los resultados de esta revisión?

    Esta revisión proporciona una síntesis actualizada y a profundidad de la evidencia disponible a lo largo de 25 años. Esto demuestra que existen beneficios del modelo de financiamiento individualizado.

    Este hallazgo sugiere que los participantes y patrocinadores deben considerar alejarse del escepticismo y virar hacia las oportunidades y el entusiasmo. Los responsables de la formulación de políticas deben tener presentes los costos de instalación y transición involucrados. La inversión en educación y entrenamiento facilitará un entendimiento más profundo del financiamiento individualizado y de los mecanismos para su implementación exitosa.

    Los estudios futuros deberían incorporar seguimientos actualizados en múltiples áreas durante un período más extensivo. Los autores de la revisión promueven el desarrollo de un enfoque de método mixto en las próximas revisiones sistemáticas en las áreas de la salud y asistencia social, con el fin de generar una evaluación más holística de la efectividad y el impacto de intervenciones complejas en el mundo real.

    ¿Cuán actualizada es esta revisión?

    Los autores de la revisión buscaron estudios hasta finales de 2016. Esta revisión sistemática Campbell fue publicada en enero de 2019.

Select language:

PLAIN LANGUAGE SUMMARY

Individualised funding has positive effects on health and social care outcomes

Individualised funding provides personal budgets for people with disabilities, to increase independence and quality of life. The approach has consistently positive effects on overall satisfaction, with some evidence also of improvements in quality of life and sense of security. There may also be fewer adverse effects. Despite implementation challenges, recipients generally prefer this intervention to traditional supports.

What is this review about?

Individualised funding is an umbrella term for disability supports funded on an individual basis. It aims to facilitate self-direction, empowerment, independence and self-determination. This review examines the effects and experiences of individualised funding.

What is the aim of this review?

This Campbell systematic review examines the effects of individualised funding on a range of health and social care outcomes. It also presents evidence on the experiences of people with a disability, their paid and unpaid supports and implementation successes and challenges from the perspective of both funding and support organisations.

What are the main findings of this review?

This study is a review of 73 studies of individualised funding for people with disabilities. These include four quantitative studies, 66 qualitative and three based on a mixed-methods design. The data refer to a 24-year period from 1992 to 2016, with data for 14,000 people. Studies were carried out in Europe, the US, Canada and Australia.

What studies are included?

Overall, the evidence suggests positive effects of individualised funding with respect to quality of life, client satisfaction and safety. There may also be fewer adverse effects. There is less evidence of impact for physical functioning, unmet need and cost effectiveness. The review finds no differences between approaches for the Adult Social Care Outcomes Toolkit (ASCOT), self-perceived health and community participation.

Recipients particularly value: flexibility, improved self-image and self-belief; more value for money; community integration; freedom to choose ‘who supports you; ‘social opportunities’; and needs-led support. Many people chose individualised funding due to previous negative experiences of traditional, segregated, group-orientated supports.

Successful implementation is supported by strong, trusting and collaborative relationships in their support network with both paid and unpaid individuals. This facilitates processes such as information sourcing, staff recruitment, network building and support with administrative and management tasks. These relationships are strengthened by financial recognition for family and friends, appropriate rates of pay, a shift in power from agencies to the individual or avoidance of paternalistic behaviour.

Challenges include long delays in accessing and receiving funds, which are compounded by overly complex and bureaucratic processes. There can be a general lack of clarity (e.g. allowable budget use) and inconsistent approaches to delivery as well as unmet information needs. Hidden costs or administrative charges can be a source of considerable concern and stress.

Staff mention involvement of local support organisations, availability of a support network for the person with a disability and timely relevant training as factors supporting implementation. Staff also highlight logistical challenges in support needs in an individualised way including, for example, responding to individual expectations, and socio-demographic differences.

What do the findings of this review mean?

This review provides an up-to-date and in-depth synthesis of the available evidence over 25 years. It shows that there are benefits of the individualised funding model. This finding suggests that practitioners and funders should consider moving away from scepticism, towards opportunity and enthusiasm. Policy makers need to be aware of the set-up and transitionary costs involved. Investment in education and training will facilitate deeper understanding of individualised funding and the mechanisms for successful implementation.

Future studies should incorporate longer follow-ups at multiple points over a longer period. The authors of the review encourage mixed-methods approaches in further systematic reviews in the field of health and social care, to provide a more holistic assessment of the effectiveness and impact of complex ‘real-world’ interventions.

How up-to-date is this review?

The review authors searched for studies up to the end of 2016. This Campbell systematic review was published in January 2019.

Library Image

See the full review

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