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 <35; a doubling in person-centred plans; and an emerging urban/rural divide. These findings provide historical context/background to the development of four pilot individualised funding initiatives in Ireland, which were evaluated in Study Two. Study Two) The individualised funding pilots in Ireland - characterised by independent-skills development and community integration - have been welcomed as a progressive development beyond traditional service provision, with reported improvements across a range of personal, health, social care and organisational domains when compared to more traditional forms of provision. These include: improved self-image, personal and social skills, new opportunities and increased community engagement. The findings also point to the importance of ‘natural supports’, who underpinned the process, and how overly-protective behaviour on the part of both paid and unpaid carers, may unintentionally pose a barrier to full implementation. Organisations achieved value for money; challenged the status quo and reportedly improved outcomes. The findings indicate further that unnecessarily complex and overly-bureaucratic systems can lead to individual burn-out. For organisations, challenges included access to funding and resistance to change. Administration, money/time/people management and accessing community based activities also challenged the process. Study Three) A total of 73 unique studies (113 titles) were identified including four of a quantitative nature, 66 qualitative and three based on a mixed-methods design. The collective quantitative findings demonstrated statistically significant improvements in a number of domains for people utilising individualised funding when compared to a control group; these included better quality of life, higher levels of satisfaction and safety, and fewer adverse effects. For the latter, it should be noted that one out of 11 measures (collected across five studies) indicated fewer adverse effects in the control group. Similarly, cost-effectiveness data were inconclusive with no differences detected in one study and inconsistent findings between three sites in a second study. The qualitative data highlighted a number of implementation facilitators and challenges as outlined below. Implementation facilitators included: freedom to choose ‘who’ supports you, ‘when’, ‘where’ and ‘how’; needs-led support; strong, trusting and collaborative relationships; flexibility; support with information sourcing, staff recruitment, network building, administrative and management tasks; community integration; social opportunities; improved self-image and self-belief; perceived value for money; and timely relevant training for all stakeholders. Implementation challenges included: lack of trusting working-relationships due to previous negative experiences; overly complex, rigid, and bureaucratic assessment, administrative and review processes; cumbersome systems that duplicate work; inaccurate or inaccessible information; inconsistent approaches to delivery; difficulties with finding and retaining suitable staff; hidden costs or administrative charges; risk aversion by paid and unpaid supports; and logistical challenges in accommodating a wide range of support needs in an individualised way. Conclusion The collective findings from this research suggest that individualised funding should not be shoehorned into existing systems, processes and procedures that have been developed for a time when societal perspectives and understanding of disability were very different from those that are in evidence today. These initiatives should, instead, be facilitated by a needs-led, person-focused, aspirational resource allocation system that is flexible and capable of adapting to various, dynamic and changing contexts. The results from Studies Two and Three provide a number of important policy and practice insights. With regard to the latter, individualised funding should perhaps be introduced on an incremental basis, starting with school leavers and, in time, moving to a ‘whole society’ approach, including disabled children, adults and older people receiving supports within traditional services. Implementation should be accompanied by the provision of necessary resources, (human, time and financial) to facilitate the transition from a traditional paternalistic model of service provision to one that is truly person-focused, needs led and community-based. This should include educational and training opportunities for all stakeholders. Ideally, implementation should also be supplemented with robust, mixed-methods evaluations which focus, not only on outcomes over time but also the context of, and mechanisms for, success into the future. With these in mind, the research findings were used to outline various options that might help to promote and support the implementation of individualised funding in Ireland. This is particularly timely and important given the plans that are currently underway for national roll-out, as evidenced by unique policy dialogue opportunities involving, for example, the National Taskforce on Personalised Budgets and a high level of interest from, and consultations with, the Health Research Board and the Department of Health in Ireland.
National University of Ireland - Maynooth
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