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- 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
- See the full review https://onlinelibrary.wiley.com/doi/10.4073/csr.2019.3
PLAIN LANGUAGE SUMMARY
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.