An evaluation of the development and implementation of individualised funding for people with a disability

Background Since the 1970s, there has been an important and continuing shift within the disability sector toward self-determination and independence for people with a disability. Individualised funding provides one way of achieving such self-determination by providing personalised and self-directed supports for people with a disability. Such supports have become globally recognised as a viable alternative to traditional group-orientated and centre-based ‘service provision’. Typically resourced from public funds, individualised funding initiatives aim to empower individuals with a disability to envision the life they want and purchase the necessary supports they need to enable them to reach their short and longer-term goals and aspirations. Objectives The research reported in this thesis was designed to: (1) map the historical and political context within which disability service provision has emerged in Ireland and to examine, in particular, trends in, and funding of, day service provision within the disability sector; (2) explore the perceived effectiveness of individualised funding in Ireland and the extent to which it might be an appropriate, feasible and acceptable mechanism for supporting people with a disability; and (3) to undertake a comprehensive mixed methods systematic review in order to examine the actual and perceived effectiveness of individualised funding initiatives for adults with a lifelong disability in terms of improvements in their health and social care outcomes, as well as the lived experience of implementation. Methods Three separate but related studies were conducted using mixed methods approaches within a pragmatic framework. Study One was retrospective in nature and used secondary national data to examine day-service utilisation in Ireland during a 15-year period (1998 to 2013). Study Two involved an in-depth national evaluation of four individualised funding pilot initiatives in Ireland. This study incorporated an extensive documentary analysis, in-depth interviews, secondary analysis of qualitative data and a participatory workshop. Study Three involved a mixed-methods systematic review of international data from 1985 – 2016, comprising a narrative analysis of quantitative data and a meta-synthesis of qualitative data. Study One) The findings of the initial mapping exercise indicated that day services in Ireland did not change substantially during the period 1998 to 2013 and often did not reflect demand. Statistically significant changes between uptake of services over the 15 year period, in addition to other pertinent socio-demographic information indicated: fewer people availing of dayservices as a proportion of the general population; more males; fewer people aged