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Introduction: Personalisation and Collaboration: Dual Tensions in Individualised Funding Policy for Older and Disabled Persons

Published online by Cambridge University Press:  02 September 2022

Michele Foster
Affiliation:
Griffith University, Brisbane, Queensland, Australia
Catherine Needham
Affiliation:
The University of Birmingham, Birmingham, UK
Eloise Hummell*
Affiliation:
Griffith University, Brisbane, Queensland, Australia
Samantha J. Borg
Affiliation:
Griffith University, Brisbane, Queensland, Australia
Karen R. Fisher
Affiliation:
The University of New South Wales, Sydney, Australia
*
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Abstract

Type
Themed Section on Personalisation and Collaboration: Dual Tensions in Individualised Funding Policy for Older and Disabled Persons
Copyright
© The Author(s), 2022. Published by Cambridge University Press

Individualisation and marketisation in policy areas such as disability, health and social care, mental health and aged care has increasingly replaced the ‘one-size-fits all’ welfare model in many western economies. For older and disabled people, this has come about through the adoption of individualised funding models that acknowledge the right to autonomy and self-determination (Earle and Boucher, Reference Earle and Boucher2020) and promote personalisation of supports (Dickinson and Glasby, Reference Dickinson and Glasby2010; Mladenov et al., Reference Mladenov, Owens and Cribb2015; Pearson et al., Reference Pearson, Watson and Manji2018; Prandini and Orlandini, Reference Prandini and Orlandini2018). Importantly, this shift is simultaneously seen as a force for personalisation by disaggregating block-funded or contracted services, and for collaboration through promotion of co-operative or networked arrangements in provision of supports (Claes et al., Reference Claes, Van Hove, Vandevelde, van Loon and Schalock2010). Although not necessarily oppositional, personalisation and collaboration can however be in tension within an increasingly marketised sector that thrives on competition and differentiation (Green et al., Reference Green, Malbon, Carey, Dickinson and Reeders2018). This themed section situates and critically examines this interplay of personalisation and collaboration, discussing comparative examples and street-level research, with a focus on older and disabled people. The aim is to shed light on the various theoretical drivers of personalisation and collaboration, alongside the complexities and interdependences of support for older and disabled people, and how these dual forces might be managed in practice.

Individualisation for older and disabled people operates through many forms. For example, direct payments, personal budgets, self-directed support, and consumer-directed care, which are typical in the UK and Ireland (Ferguson, Reference Ferguson2012; Fleming et al., Reference Fleming, McGilloway and Barry2016; Pearson et al., Reference Pearson, Watson and Manji2018), and in Australia, individual budgets, which may or may not be self-managed (Laragy et al., Reference Laragy, Fisher, Purcal and Jenkinson2015). Likewise, there are variable drivers and ideologies, which have influenced the evolution and uptake of these new forms, and the extent to which diverse interests have coalesced (Pearson et al., Reference Pearson, Watson and Manji2018). As an example, despite the appeal of direct payments driven by grassroots reform, local authorities in Scotland were initially sceptical about the privatisation agenda (Pearson et al., Reference Pearson, Watson and Manji2018), as was the case in Australia where concerns ensued about marketisation overshadowing rights-based reform (Fawcett and Plath, Reference Fawcett and Plath2014). Nevertheless, in seeking to personalise services and supports for people with complex needs all such models are highly reliant on good collaboration in the organisation of services and implementation of supports (Claes et al., Reference Claes, Van Hove, Vandevelde, van Loon and Schalock2010; Needham and Dickinson, Reference Needham and Dickinson2018; Fleming et al., Reference Fleming, Gilloway, Hernon, Furlong, O’Doherty, Keogh and Stainton2019). Yet, reliance on good collaboration is also risky. A marketised, and more competitive environment, heightens the issue of financial sustainability, both for providers and funders (Foster et al., Reference Foster, Hummell, Fisher, Borg, Needham and Venning2021). At the same time, administrative and institutional complexities across multiple services and sectors (Kaehne, Reference Kaehne2015), and associated cultural differences, can be challenging for collaboration and partnerships, particularly in the absence of specific enabling structures (Pearson et al., Reference Pearson, Watson and Manji2018). Even so, there can be a false security in relying fully on formal mechanisms to stimulate collaboration, without organisational mutuality and shared values (Hummell et al., Reference Hummell, Venning, Foster, Fisher and Kuipers2021). As such, understanding the interplay of personalisation and collaboration and how these goals can co-exist is critical to realising the aspirations and objectives of individualised funding for older and disabled people.

The articles that comprise this themed section address the interplay of personalisation and collaboration for older and disabled people and draw on examples from Australia and the UK. These countries share the dual goals of delivering individualised support and stimulating more collaborative or integrated forms of funding and provision (Needham and Dickinson, Reference Needham and Dickinson2018). Yet, their distinguishing narratives and methods of personalisation and collaboration offer an interesting basis for the study of these dual policy forces. Namely, while Australia draws attention to personalisation and collaboration at the individual level, the four nations of the UK have also increasingly pursued integration at the systemic level as a means of strengthening personalised and seamless supports for older and disabled people.

Australia’s approach to individualised funding for disabled people represented by the introduction of the National Disability Insurance Scheme (NDIS) in 2013 (Australian Government, 2013) applies to disabled citizens up to the age of sixty-five years, although once they enter the scheme it is lifelong. It brings disparate state-based funding and provision of disability support under one federal-led universal scheme (Foster et al., Reference Foster, Henman, Tilse, Fleming, Allen and Harrington2016), but effectively maintains the siloed structures of funding, administration, and service delivery between sectors, such as disability and health. Operationally, the planning and management of funded supports is underpinned by complex market structures, which provide different types of supports, signalling a strong emphasis on consumer choice (Carey et al., Reference Carey, Malbon, Gilchrist, Chand, Kavanagh and Alexander2019). The UK has a longer history of individualisation of funding, commencing with the Direct Payments Act 1996. It is the succession of policy reforms over the subsequent two decades, which distinguish the approach to individualised funding from Australia. For example, England’s Personal Health Budgets (PHBs) introduced in 2009, and modelled on the social care approach, are an important part of England’s history of personalisation and collaboration and a unique contrast to Australia. As part of efforts to bring health and care closer together, the initial focus on individual choice and control has shifted more towards population-level planning and the structural integration of health and social care systems. These two systems contrast to the example of Scotland. Since the introduction of the Social Care (Self-directed Support) (Scotland) Act 2013 (SDS Act) (Scottish Government, 2014), self-directed support has evolved in a different manner to the original direct payments adopted by England, with models focused on marketised care services (Pearson et al., Reference Pearson, Watson and Manji2018).

This themed section includes five articles, followed by a section of suggested additional resources. It should be noted that terminology use differs across countries, with Australia commonly using ‘people’ or ‘person with disability’ while ‘disabled person’ is used across the UK.

The first contribution in this themed section is the state-of-the-art article by Needham and colleagues, which reviews the features of individualised budgets for disabled and older adults to understand the mechanisms for disaggregation and collaboration. Taking a historical and comparative perspective, focusing on UK and Australia, the article examines how personalisation and collaboration might be complementary or in tension. Reviewing and comparing individualised funding policy and support for older and disabled people in England, Scotland, Wales and Northern Ireland care systems and Australia’s NDIS and aged care system, the authors also address the question, ‘Is there scope for reconciling the forces?’. The discussion clearly shows the twin goals of personalisation and collaboration to be both a commitment and ongoing challenge in all countries, necessarily requiring time and resources to properly embed into practice. The article concludes with some helpful research suggestions, taking into account the temporal and contextual differences between the UK and Australia.

Second, McKenzie and Smith-Merry present an Australian case study of a program aimed at improving collaboration amongst service providers for NDIS participants with complex circumstances and unmet needs. The program, known as the Integrated Service Response (ISR), was a local initiative to bring together support providers with social and community services to develop good interagency collaboration and sustainable solutions for people with complex needs. The article reports on the evaluation of outcomes of the program, which included interview and observation methods. The findings reinforce the complexities of personalisation and collaboration. Although the ISR program provided mechanisms through which inter-agency collaborative practice could be enabled, somewhat like the findings of Allen and colleagues in England (fourth article in this themed section), a lack of resources could stymie personalised planning at the individual level. Ongoing reliance on willingness to collaborate, and gaps in the availability of supports, presented a threat to the relationship between personalisation and collaboration. The authors recommend a range of more permanent policy mechanisms, including explicit funding to support collaborative efforts in delivering personalised support.

Third, Hummell and colleagues report on a qualitative study with twenty-eight managers of organisations providing services to NDIS participants, which aimed to understand the dynamics of multi-agency working with individualised funding policy. The findings indicate the multi-agency challenges surrounding personalised support when several providers are contracted to deliver different parts of a NDIS participant’s plan, blurring organisational responsibilities and accountabilities. The data also show the potential contradiction within individualised funding policy with such organisational disconnection creating more need for organisational collaboration to ensure quality service provision. While organisations were committed overall to collaboration, it was largely discretionary. The authors concur with previous recommendations for stronger market stewardship, regulatory mechanisms and discrete funding to support and sustain collaboration in provision of personalised support.

Fourth, Allen and colleagues bring attention to the unique institutional and organisational complexities confronting personalisation and integration in adult social care in England. Their article draws on qualitative data from eight English case studies in a thematic analysis exploring how well integration and personalisation are played out in practice. This includes a rich data source of 170 interviews and two focus groups from a range of service providers and end-users. Findings explore the different interpretations of integration and personalisation from the varying perspectives, pinpointing the main tensions experienced by the stakeholder groups and how these impact resources and practice. Importantly, while acknowledging the emphasis on system-wide reform to encourage better integration, the authors argue for more attention and resources to be devoted to good, personalised planning at the individual level.

Finally, the article by Rummery and colleagues is a notable contribution given the way that self-directed support has evolved in Scotland compared to the personalisation policy in England. In this article, the authors explore the developments in personalisation and partnerships, examining data from a Scottish study of what users of personalised services need to achieve personalised outcomes. As background, the article reviews the international evidence on what makes personalisation work, and discusses the concept of partnership, presenting a framework based on interdependence and trust, before outlining Scotland’s policy context. The authors use survey and focus group data from users about perspectives on self-directed support to provide a discussion about partnership working to overcome interagency and interprofessional barriers. Flexibility to transcend agency boundaries was a priority for users. However, the findings also clearly show more effort is required to build the trust required between users and agencies for good partnership working. The article concludes with some specific solutions suggested by users.

Jointly, this collection of articles is a timely contribution to the debate about the individualisation of funding for older and disabled people – namely, bringing attention to the understudied issue of collaboration alongside personalisation.

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