WP8 Deliverable 8.3

A qualitative inventory of the key drivers of social innovation in social support and long-term care (QUALIND)

Katharine Schulmann and Kai Leichsenring with contributions by Georgia Casanova, Vasilica Ciucă, Mihaela Ghența, Rita Gouveia, Giovanni Lamura, Aniela Matei, Luise Mladen, Gerhard Naegele, Ian Oja, Gerli Paat-Ahi, Speranța Pîrciog, Monika Reichert, Sandra Schulze, Zsuzsa Széman, Mária A. Tróbert

Final Report Vienna, December 2015

Funded by the European Commission’s Seventh Framework Programme FP7-SSH-2012-1/No 320333 www.mopact.group.shef.ac.uk MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Contents

1 Introduction 3 1.1 Social innovation and long-term care 3 1.2 Objectives and structure of the report 4 1.2.1 Objectives 4 1.2.2 Structure 5 2 Identifying key factors in the development of effective social innovation practices 6 2.1 Methodology 6 2.2 From the literature: drivers enabling social innovation 6 2.3 From the literature: barriers to social innovation 8 2.4 Case study analysis of the barriers & drivers of social innovation initiatives in long- term care 10 2.5 Overview of key barriers & drivers 12 3 Findings from focus groups and interviews with stakeholders 13 3.1 Methodology 13 3.1.1 Organisation and participant recruitment 13 3.1.2 Structure of the focus groups and interviews 14 3.1.3 Analysis of data 15 3.2 Comparison of priority areas for innovation in LTC by country and care regime 15 3.3 Thematic clustering of priority areas for innovation in LTC 17 3.3.1 Supporting & empowering users & informal carers 18 3.3.2 Shifting the ‘ageing’ paradigm 20 3.3.3 Expansion of services 21 3.3.4 Community-based care 26 3.3.5 LTC Workforce 27 3.3.6 Integration and coordination of care 28 3.3.7 Financing and governance 33 3.3.8 Sustainability 35 4 Conclusions and policy recommendations 37 4.1 Drawing conclusions from the focus groups and expert interviews 37 4.2 Policy recommendations 38 5 References 44 6 Annex I: Focus group participants and expert interviewees by country 47 6.1 Austria 47 6.2 Germany 48 6.3 Estonia 51 6.4 Hungary 52 6.5 Italy 53 6.6 Portugal 55 6.7 Romania 56 7 Annex II: MoPAct Focus Groups ‘Social Innovation and Long-term Care’ – Design 58 8 Annex III: Priority areas for social innovation in LTC and social support, by country 62

2 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

1 Introduction

1.1 Social innovation and long-term care There is a clear need for change and innovation in long-term care policy and practice in Europe. This need arises from a combination of factors, including but not limited to the rising share of the population occupied by older persons (European Commission’s Ageing Report, 2012), a diminishing pool of available informal carers, and constraints on public sector financing, all of which raise concerns that current service options and coverage are inadequate in meeting the demand for high quality care in many countries. While the convergence of these realities poses a distinct challenge for policy-makers and providers, it can also be viewed as an opportunity to innovate, to change the status quo for the better by improving and expanding long-term care services, financing and delivery. In this context, long-term care and social support are notably appropriate areas to search for ‘social innovation’, needs and potentials for change. Following a detailed investigation of these issues and examples of good practice in selected EU Member States (Schulmann & Leichsenring, 2014)1 the present report sets out to focus more specifically on drivers and potentials of social innovation in emerging long-term care systems.

Scholars locate the origins of the term ‘social innovation’ in Europe amidst the social upheaval of the 1960s. Since then, however, a large body of literature has developed around the concept with multiple and disparate interpretations and applications of social innovation (Moulaert et al., 2013). This report adheres to the definition developed by the European Commission in collaboration with the Young Foundation. According to this definition, social innovation is defined as new and progressive ideas that meet social needs by building new relationships or new forms of collabora- tion (European Commission, 2011). Defined as such, social innovations can occur and take hold organically as a reaction to shortage and political deadlock, e.g. the widespread phenomenon of live-in care assistants in Austria and Germany in which migrants from neighbouring countries are employed, largely informally, to care for older persons living at home. There are however growing attempts on the part of policy-makers in many countries to formalise the concept and the process in the hopes that socially innovative practices may be activated to address specific policy challenges, e.g. by funding ‘social innovation’ programmes and by establishing ‘innovation hubs’ or ‘incubators’. Such efforts are also supported by one of the key objectives of the European Union’s Europe 2020 Strategy, namely to ensure “that innovative ideas can be turned into new products and services that create growth, quality jobs and help address European and global societal challenges” (European Commission, 2010: 12). However, while new approaches to support social innovation have been activated in areas such as city development, new technologies, youth and employment, to name a few, no such dynamic development can be observed at first sight in the area of active ageing and long-term care.

In order to take advantage of the opportunities offered by social innovation in the areas of long- term care and social support for older people, it is therefore important to understand the key factors involved in the development, implementation, diffusion and sustainability of new

1 This previous deliverable for the MoPAct project entitled ‘Social support and long-term care in EU care regimes: framework conditions and initiatives of social innovation in an active ageing perspective’ is available online at: http://mopact.group.shef.ac.uk/wp-content/uploads/2013/10/Social-support-overview-report.pdf

3 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care developments in this area and investigate on their potential to promote social innovation. Drawing on findings from desk research and qualitative data from interviews and focus groups with stakeholders in selected countries, this report endeavours to identify these key factors and in how far they function as barriers and drivers of social innovation. Based on relevant stakeholders’ proposals, a range of policy recommendations for the successful take-up of innovative programmes have been developed and will conclude this report.

According to a framework developed by the Young Foundation in the UK, the process of social innovation is divided among the following phases: prompts, proposals, prototypes, sustaining, scaling, and systemic change (The Young Foundation, 2012). Although the development of innovations does not necessarily adhere to a linear model, this process-based model is useful as a starting point for describing the stages of social innovation from recognition and acknowledgement of a societal challenge or need, to germination of new ideas and solutions, and ultimately to achieving systemic change in the area of the innovation. Applying the findings from the desk research and qualitative data to this model reveals that, in the area of long-term care and social support for older adults, while there does not appear to be a shortage of prompts or proposals for innovation, or even of prototypes (understood as the pilot phase of an initiative) addressing long- term care needs, the main barriers to social innovation present themselves in the later stages of the process, namely when it comes to issues of sustainability, scaling up, and mainstreaming of innovative projects.

Figure 1 Model of the six phases of the social innovation process

Systemic Prompts Proposals Prototypes Sustaining Scaling change

Source: adapted from the Young Foundation (2012).

As a result of the considerable policy attention afforded to social innovation in the last decade at the EU level, a substantial body of research has accumulated addressing its conceptual and practical underpinnings, though sources specific to long-term care remain limited. While policy-makers and researchers seem to more or less agree on a conceptualisation of social innovation, the interviews and focus groups revealed a stark disconnect between their understanding and that of service providers and practitioners operating on the ground. The following chapters will address these and other key issues emerging from the qualitative study in detail.

1.2 Objectives and structure of the report 1.2.1 Objectives The goals of the Europe 2020 Strategy, in particular in relation to extending employment and reducing poverty and social exclusion, are the main points of departure for the research presented in this report, with a narrowed focus on promoting social innovation in long-term care to meet the societal challenges posed by Europe’s ageing populations. Previous research carried out within the framework of the MoPAct Project with respect to ‘Social support and long-term care’ involved a comparative analysis of the level of long-term care need in select European countries, and of

4 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care available policies and services within the long-term care sector (and health and social care sectors), as well as in-depth case study analysis of social innovation initiatives in each of the partner countries (Schulmann & Leichsenring, 2014). The research carried out in the context of this report builds on these previous tasks, with the following two main objectives:

1) to identify the principal drivers of and barriers to social innovation in the areas of long-term care provision and social support at the meso- and macro-levels; and 2) to propose recommendations for policy-makers on how to effectively harness the opportu- nities offered by social innovation.

1.2.2 Structure

Following the introduction, the second chapter of the report presents the findings from desk research on the subject of innovation in long-term care. The desk research took the form of a literature review on the principal barriers and drivers involved in the development, implementa- tion, and sustainable scaling-up of social innovations, and a case study analysis of innovative initiatives in each of the partner countries. The review of the literature was carried out by each of the work package partners in order to ensure that respective country contexts were taken into consideration in the final version of the review. The review, together with analysis of the case studies of innovation initiatives gathered as part of a previous task, led to the identification of a preliminary set of key drivers and barriers.

This preliminary set of key factors served as the foundation for the qualitative data collection and analysis, the findings from which are presented in the third chapter of the report. The qualitative study consisted of interviews and focus groups with stakeholders recruited for their expertise and experience in the organisation and delivery of long-term care and social support services for older people as well as for experience in social innovation and the development of new types of organisational design and social development. A concerted effort was made to capture intra- country variation in patterns of care need and available services, e.g. by conducting focus groups in both urban and rural settings, and to gather heterogeneous perspectives, e.g. by recruiting participants not only from within traditional care services, but also from design and innovation- specific research fields. In the final chapter of the report, the findings from both the desk research and the qualitative data form the basis for a series of policy recommendations.

5 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

2 Identifying key factors in the development of effective social innovation practices

The purpose of the literature review and case study analysis was to elucidate the necessary conditions under which innovative ideas in the area of long-term care are able to develop and grow into sustainable initiatives, and to begin to outline a conceptual framework capturing the key factors involved in the development and implementation of social innovation in long-term care, its drivers and conversely, its barriers. The first section briefly describes the methodology used; the second and third summarise the main findings of the literature review and address the drivers and barriers of social innovation, respectively; the fourth section summarises the findings from the case study analysis of innovative initiatives and the preliminary set of key factors deemed necessary for bringing about and sustaining innovations in long-term care. The final section includes an overview of the key findings from both exercises.

2.1 Methodology A two-part approach was used in order to make use of both theoretical and practice-based sources of information. First, a literature review was carried out in order to provide an overview of country- specific, regional and international sources contributing to the discourse on the key factors, drivers and barriers in social innovation in long-term care. The literature review included analysis of peer- reviewed journal articles, national and international grey literature, as well as websites of specialised institutions and research networks at the EU-level, e.g. Social Innovation Exchange;2 Social Innovation Europe;3 European Innovation Partnership on Active and Healthy Ageing (EIP AHA).4 Second, each of the 18 innovative initiatives identified in the course of a previous task within the MoPAct project were analysed individually to determine the drivers of and barriers to its development. In a later stage, in the course of a collaborative workshop in which the work package partners participated, these barriers and drivers were grouped into key themes/factors (see section 2.4). The key factors were validated in the course of the focus groups and expert interviews carried out in the second stage of the study, and described in Chapter 3.

2.2 From the literature: drivers enabling social innovation Structural conditions at the national and sub-national levels, particularly the availability of long- term financing, are key drivers of innovation, playing a crucial role in the life cycle of innovative initiatives (Köhler & Goldmann, 2010; Martinelli, 2013; Nock et al., 2013; Howaldt & Schwarz, 2011). According to one of the editors of The International Handbook on Social Innovation, “the long-term sustainability of social innovations is very often determined by resources (especially funding) from the state, as well as by regulatory environments that constrain or enable their operation” (MacCallum, 2013: 343). So while framework conditions – e.g. legal frameworks governing funding and provision; structure and availability of services; identity of long-term care

2 http://www.socialinnovationexchange.org/ 3 https://webgate.ec.europa.eu/socialinnovationeurope/ 4 http://ec.europa.eu/research/innovation-union/index_en.cfm?section=active-healthy-ageing&pg=home

6 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care system) – are undoubtedly important as drivers of innovation, achieving a balance between a nurturing regulatory environment and one that stifles creativity can be difficult. In speaking about social change more generally, the authors of The Open Book of Social Innovation (Murray et al., 2010) draw attention to the tension between the people with the ideas, or the ‘bees,’ and the institutions with financial resources and political clout, or the ‘trees,’ who make scaling up and sustainability possible. They argue that both are needed for successful innovation and that the key is in building alliances between the two (Murray et al., 2010).

Technology is considered one of the primary drivers of innovation in long-term care (Lluch & Abadie, 2013; Lattanzio et al., 2014; Kesselring et al., 2014). ICTs are the foundation for many basic services available to older people and have become a crucial element in helping to maintain independence and remain living in one’s own home. These technologies include tele-care and tele- medicine, tele-monitoring, emergency alarm systems, and web-based information and consultation platforms (Billings et al., 2013; Tinker et al., 2013; Olsson, 2014). Despite its promise, certain authors maintain that the use of ICT is in many cases an untapped resource in long-term care due to the ‘digital divide’ between the younger and older generations (Boccagni et al., 2010; Kluzer et al., 2010; Miranda de Larra, 2007). More recent contributions to the literature in this area take a comparative European approach to discussing ICT and eHealth tools currently in use (Lluch & Abadie, 2013; Lattanzio et al., 2014). Interestingly, Lattanzio and colleagues (2014) characterise the relationship between geriatric medicine and state of the art ICT as symbiotic, highlighting the fact that multiple scientific research projects in the field of ICT are working to unravel how diverse care needs can be translated into technological innovations for the growing older population. In this way, the authors underline the indispensable role of geriatric medicine, and by extension long-term care, in defining future developments in ICT (Lattanzio et al., 2014). Looking at ICT use specifically in the case of integrated care, Lluch and Abadie (2013) emphasise the supportive and complementary role ICT has played in the development of integrated care for older people. Interoperability of ICT applications are a means to re-organisation of fragmented models of care and delivery of integrated care in which different levels of care and different partners can communicate, enabling coordination and cooperation. Technology-based innovations can also be hindered in their success if the digital literacy of the target user is not appropriately evaluated (Rossi Mori & Dandi, 2012). This example illustrates a frequently occurring phenomenon that should be kept in mind: something considered a driver of innovation can also become a barrier; depending on the context, they may often represent two sides of the same coin.

The integrated model of long-term care is in and of itself a driver of innovation. According to the integrated care model, a wide range of services traditionally provided by both the health and social care sectors are coordinated and the user’s informal network and community resources are incorporated into the planning and delivery of services (Leichsenring et al., 2013; see also http://interlinks.euro.centre.org/). Several authors emphasise that innovation has been powered by the application of integrated care strategies of care, services and policies (Fondazione Cassa di Risparmio di Cuneo, 2011; Kesselring et al., 2014; Maino, 2012). One example of turning whole- system-thinking into social and organisational innovation is the home care provider Buurtzorg (‘Care in the Neighbourhood’) in the Netherlands, which employs autonomous teams of community nurses who not only provide person-centred care to their clients, but who also coordinate and case manage user’s specialist health and social care needs (Nandram & Koster, 2014; Laloux, 2014; http://www.buurtzorgnederland.com). By moving away from a fragmented and silo-like approach to care in order to embrace a more integrated approach, providers and policy-makers are

7 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care compelled to make new connections that bridge sector divides and to build new partnerships and stakeholder networks. Also Köhler and Goldmann (2010: 260) underline that “networking is the key to social innovation in long-term care”. As such, the process of integrating care can be a powerful catalyst for innovative policies and practices.

The involvement of diverse stakeholders is another crucial driver of innovation in long-term care. Each stakeholder – including users, their families, and volunteer networks – brings a different perspective, different interests, and different competencies to the table (Maino, 2012; Miranda de Larra, 2010; Repkova et al., 2013). The creation of partnerships and networks comprised of different stakeholder groups in the public, private, and third sectors can serve to stimulate innovation (Murray et al., 2010; European Commission, 2011; Martinelli, 2013). A willingness and openness on the part of institutions (with particular emphasis on public institutions) to collaborate with others and to take risks is fundamental to the creation of new partnerships (Nock et al., 2013; Maino, 2012; Fondazione Cassa di Risparmio di Cuneo, 2011; European Commission, 2011), as is trust creation (Jalonen & Juntunen, 2011).

2.3 From the literature: barriers to social innovation One of the few reflections on obstacles to innovation specifically in the area of long-term care for older people comes from Goldmann (2010). The model she develops pinpoints three central issues at the organisational level that hamper innovation in residential and community care settings: (i) bureaucratic/administrative requirements, (ii) leadership problems, and (iii) lack of involvement of care professionals (Goldmann, 2010). The model gives equal weight to the role of care staff in the development of innovations, recognising that in many cases the people working on the ground, or the ‘bees’ mentioned earlier, are the ones most likely to bring fresh ideas and solutions to address the challenges that they, their co-workers, and their clients confront on a daily basis.

An absence or lack of many of the drivers mentioned in the previous section can be considered barriers to innovation. A lack of adequate and secure financing, particularly in the early phases of a project and in the transitional period of scaling up, poses a substantial threat to lasting innovation (Arpinte, 2009; Nock et al., 2013). Structural conditions and rigid regulatory frameworks that are not conducive to creative thinking or new collaborations are also fundamental barriers (Nock et al., 2013; NORDEN, 2011; Crepaldi et al., 2012). In certain country contexts, specifically in the transition countries of Central and Eastern Europe, much of the available literature points to unfavourable structural conditions as a primary barrier to innovation. This is explained in part by the fact that prior to the 1990s, social and health care services were provided by the state, the organisation of services was largely centralised, and little to no institutional space for innovation existed (Arpinte, 2009; Crepaldi et al., 2012; Vameşu & Barna, 2013). Volunteerism and cooperative movements were also negatively affected due to the rigidity of public service provision during this period (Vameşu & Barna, 2013). The novelty of social innovation concepts in these same countries is mirrored by the novelty of long-term care systems endowed with their own distinct identities, leading to a lag in developments in both areas.

8 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Figure 2 Barriers to innovation in long-term care for older people

Bureaucratic/administrative Leadership problems requirements • Hierarchical structure • Financing arrangements • Situations of overload/excessive • Ever-increasing documentation strain • Lack of sufficient time • Lack of management experience

Lack of involvement (of care professionals)

• Centralised control • Misconception that care is ‘every woman’s work’ • Underestimation of employees’ skills • Hierarchical relationship between medicine and nursing

Source: adapted and translated from Goldmann (2010).

Ill-designed use of ICT and other technologies can hamper innovation as easily as it can advance it. This can occur for a number of reasons. First, if the innovation calls for user engagement with some kind of technological device (this applies to carers as well as the persons in need of care), it is crucial that they be able to use it and to be comfortable doing so (Rossi Mori & Dandi, 2012). In long-term care for older people, this is of particular concern due to the advanced age of many end- users and the potential presence of a decline in cognitive ability. Therefore, a lack of appropriate training in the use of ICT tools may also constitute a barrier (Lattanzio et al., 2014; Lluch and Abadie, 2013; Redecker et al., 2010). Second, ICT and other technologies can themselves be a barrier to social innovation when technology takes over as the primary focus of a given initiative, replacing complex care processes, reducing human involvement in care and potentially leading to isolation and social exclusion of the older person. These two types of barriers can lead to what has been termed “innovation failure” (Fondazione Cassa di Risparmio di Cuneo, 2011). This last point raises an issue that reoccurs in the literature and that deserves mention, namely the conflation of technological innovation with social innovation. The emphasis on the building of new inter-personal and inter-institutional relationships contained within the definition of social innovation distinguishes it from other forms of innovation, including technological innovation.

Another major obstacle to innovation is a reluctance to collaborate and build networks that bridge the numerous divides between public and private sectors, formal and informal care, health and social care. This holds true in terms of financing, in coordination of service provision, and at a most fundamental level, in the interaction between different professional groups providing care (Murray et al., 2010; European Commission, 2011). Concerning the integration of and involvement of different stakeholders, a major obstacle is the difficulty of communication and cooperation between different actors, with different competencies and missions. The risk of “innovation

9 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care disconnect” is high when fragmentation of services exist between national, regional, and municipal social and health care services (Fondazione Cassa di Risparmio di Cuneo, 2011; Maino, 2012).

2.4 Case study analysis of the barriers & drivers of social innovation initiatives in long-term care Taking a practice-based approach, the authors identified and analysed innovative initiatives in order to draw out the decisive drivers of their success and the barriers or obstacles to their effectiveness and continuation. Initiatives were identified in selected countries (AT, BG, CZ, DE, EE, FI, HU, IT, NL, RO, PT). The final 18 initiatives representing 12 EU countries were collectively selected based on fulfilment of specific criteria qualifying them as ‘socially innovative’ in the area of long-term care.5 Web-based research and expert interviews formed the basis of detailed description and analysis of each of the initiatives, including SWOT analysis. Within the framework of a workshop, the drivers and barriers, and from them ultimately the key common factors across the 18 initiatives were teased out and developed.

Table 1 presents the results of this process. Using this methodology, because the drivers and barriers were drawn from specific initiatives or cases, a counterpart for each of the drivers and barriers identified does not necessarily exist. For example, for the key factor ‘Network’, none of the initiatives cited a lack of appropriate stakeholder networks or partnerships as a barrier to their success. This does not mean that networks as such did not play a role, only that they were not explicitly mentioned in the descriptions/analysis. The idea is to then be able to extrapolate from these case-bound findings to present generalisable factors in the development, implementation and scaling up of social innovation initiatives in long-term care.

In terms of the frequency with which each of the factors appeared across the initiatives, ‘Funding,’ ‘Network,’ and ‘Design’ were most prevalent. ‘Target group,’ ‘Framework/structural conditions’, ‘Sustainability,’ and ‘Leadership’ also reappeared often; to a lesser extent, ‘User involvement,’ ‘Coordination/integration,’ and ‘Workforce.’ The remaining factors, ‘Local/community focus’ and ‘LTC specificity’ were less prevalent across the board, though nonetheless crucial in the specific contexts from which they emerged.

5 For details refer to Schulmann & Leichsenring (2014), in particular ‘Annex I’ of Social support and long-term care in EU care regimes: framework conditions and initiatives of social innovation in an active ageing perspective, for in-depth descriptions and analysis of the innovative initiatives.

10 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Table 1 The key factors involved in social innovation in long-term care, its drivers and barriers

Key factors Drivers Barriers Coordination/integration Uses integrated care model Structural fragmentation of LTC system; Lack of coordination between partners Design Evaluation is incorporated into design; Lack of underlying incentive Efficient use of ICT; Universal access; structure; Difficulties recruiting Expert input and feedback; Successful participants; Difficulties evaluating dissemination; Quality management the initiative; Design is ill-suited to system is incorporated; Rigorous meet needs evidence base Framework/structural Legislative foundation/recognition of Unfavourable framework/structural conditions services provided; Draws on existing conditions; Lack of harmonised data; resources (e.g. human resources, Ill-defined identity of the initiative existing built infrastructure); (e.g. legal status); Disinterest on the Autonomy of affiliate organisations part of policy-makers Funding Affordability for the end user; Raising User payment required; Insufficient private funds; Public sector co- funding (public or private); No public financing; EU-level funding funding; High implementation costs; Difficulties securing transition from EU- to public funding Leadership Institutional leadership (often by an organisation in the third sector) Local/community focus Adapted to meet local needs and contexts; Strong sense of community ownership; Broad community involvement LTC specificity Incorporates a community care model; Case management component; Incorporates individualised, user- centred care plan Network Well-established/active stakeholder network; Public-private partnership; Contributions of volunteers; Formalised institutional partnerships; Multi-actor/multi-sector co-operation Sustainability Successful transition from pilot Short duration leading to lack of program; Integration of services into continuity and sustainability; Lack of publicly-provided services dissemination/awareness-raising Target group Restricted coverage; Resistance to participation; Lack of computer literacy User involvement User-led components; User input and feedback during development and implementation Workforce Multi-disciplinary project team; Built-in Unskilled/ill-supported informal care element to ensure workforce workforce; Insufficient (human) sustainability resources Source: authors’ compilation.

11 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

2.5 Overview of key barriers & drivers

There are clear overlaps between the findings from the literature review and from the case-by-case analysis of the innovative initiatives. It emerges from both approaches that a range of dynamic factors at the macro- (public policies, regulatory frameworks and financing structures), the meso- (provider/institutional, community) and micro-levels (professionals, end-users) influence innovative practices. Mention of the importance of having public support, both in terms of financing and in regulatory frameworks that moderate the administrative burden on care providers and encourage the creation of new institutional partnerships is pervasive, though not really surprising, in both the literature and the case studies. Similarly, the need to build networks and reach across professional, disciplinary and sector boundaries is ubiquitous. Consensus also seems to be that the promotion of an integrated service model in which users’ care needs and resources are managed in a coordinated fashion is particularly relevant for innovations in long-term care.

Another finding to emerge from both the review of the literature and from analysis of the individual innovation initiatives is the importance of the specific country context in determining the primary barriers and drivers of innovation in long-term care. In countries with more well-developed long- term care systems and established regulatory frameworks (e.g. Germany, UK, The Netherlands), research and scholarship on the subject is also more readily available, and social innovation initiatives tend to have evolved to address more complex needs and service delivery challenges. By contrast, in countries in which public long-term care services specifically addressing the needs of older people are still in their infancy (e.g. Czech Republic, Hungary, Romania), scholarship and national discourse related to social innovation in the field of long-term care is likewise limited, and innovations are geared towards more basic needs and services, e.g. emergency alarm systems. This inter-country variation can be directly linked with the degree to which long-term care is afforded policy space and public sector investment in a given country.

12 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

3 Findings from focus groups and interviews with stakeholders

While the previous chapter laid out the key factors that, according to the literature and practice examples, are involved in developing, implementing and ultimately scaling up innovations in LTC, this section shifts the focus to a practice-based discussion of the need for innovation in different facets of LTC, and in specific country contexts. Employing qualitative methods consisting of focus groups supplemented by expert interviews with care providers and other diverse stakeholders, the study team investigated the challenges facing LTC systems, how innovation in long-term care can serve to improve the efficiency and appropriateness of care services, and the drivers and barriers to the implementation and sustainability of innovative practices. The specific objectives of the focus groups, supported by interviews with experts, were threefold:

(i) to identify necessary innovations in long-term care in the participating country contexts (barriers/drivers), (ii) to develop policy recommendations/measures/first steps to realise the most important innovations, (iii) to validate the findings from the previous task on the key factors driving and hindering social innovations in LTC. Ultimately, the findings from the focus groups and interviews will be channelled into the development of future scenarios as part of future research on ‘Social support and long-term care’ in the framework of MoPAct.

This chapter is divided into the following sections: first, the methodology used in carrying out the focus groups and interviews is described. Second, an overview of the priority areas for innovation by country and care regime is provided. Third, a thematic analysis of the most important themes emerging from the focus groups and interviews is presented.

3.1 Methodology 3.1.1 Organisation and participant recruitment In total, fifteen focus groups with stakeholders were carried out by the involved partner institutions in the following countries: Austria, Germany, Estonia, Hungary, Italy, Portugal, and Romania (For a detailed list of FG participants and interviewees, see Annex I). With the exception of Germany, in which 3 were organised, each country partner carried out 2 focus groups. The number of focus group participants ranged from 5 to 12. To supplement the focus groups, 20 experts working in the sector at the national level and with service providers and social initiatives were recruited and interviewed. Participants for the focus groups and interviews were recruited from among the following stakeholder groups:

• Care and social support providers, e.g. public and private sector organisations, NGOs • Organisations representing carers, care recipients, employers, e.g. associations, unions, NGOs • Local/regional policy-makers and government representatives • Social/health insurance representatives • Industry representatives, e.g. ICT company working in the area of LTC

13 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

In each country, an attempt was made to organise the focus groups in such a way as to gather the perspectives of diverse stakeholders, and to capture intra-country variation in terms of the nature and the availability of care and social support services. To accomplish this, the location and type of participants recruited across the focus groups was intentionally varied in each country.

In Austria, the first focus group was carried out in a small town in the state of Carinthia around the social innovation initiative ‘Village Service’ (Dorfservice), while the second was conducted in the capital city of Vienna. In Germany, the three focus groups were organised in the city of Dortmund, in the rural district of Leer, and in Norderstedt, a more populous district in the vicinity of Hamburg. In Estonia, the first focus group recruited participants from traditional public sector and NGO service providers, while the second sought out professionals working for more innovative service providers, e.g. start-up companies. The focus groups in Hungary focused on the urban/rural divide, running the first focus group with stakeholders in the capital city of Budapest, and the second in the smaller city of Nyíregyháza in the country’s eastern region. To capture notable regional differences in the country’s organisation and delivery of long-term care services, the focus groups in Italy were carried out in Milan and Ancona, cities representing the northern and central Italian regional context, respectively, while the point of view of Southern Italian regions was captured via inter- views with experts from this area. In Portugal, the first focus group was organised around one initiative, the ‘Platform for Ageing’ (Plataforma para a Area do Envelhecimento), which is itself composed of several institutions operating within the municipality of Lisbon (county councils, municipality, schools, public and private social organisations, hospitals, citizen associations, nursing homes). The second focus group was comprised of public and private providers of home care services in the municipality of Lisboa. Lastly, the focus groups carried out in Romania, conducted with a broad range of stakeholders, focused on the urban/rural divide: the first focus group was carried out with public and private providers, organisations representing employers, care recipients, seniors’ associations and local policy makers in the capital Bucharest, and the second with public providers of social services and a representative of a seniors’ association from the rural part of the Bucharest-Ilfov Region.

3.1.2 Structure of the focus groups and interviews All focus groups followed the same general structure, lasting approximately three hours (See Annex II for detailed agenda). In the first session of the focus group, participants worked in small groups to brainstorm 3-5 urgently needed innovations within LTC (i.e. areas within LTC in need of improve- ment) on index cards provided by the moderator. These cards were then collected, the whole group reconvened, and participants were asked to explain and elaborate on each of the most urgently needed innovations identified. These innovations were clustered by theme, and once the clustering was complete, participants were asked to vote on the two themes they would most like to discuss in detail in the second half of the session. Once the two themes were selected, the moderator led participants in an in-depth discussion of both themes, in turn. Participants were asked to describe the current situation related to each topic, and to identify a strategy for bringing about the necessary innovation. After the discussion came to a close, the moderator proceeded to present the key factors identified by the MoPAct research team to participants. Participants were asked to comment if they disagreed with any of the factors, or if they had suggestions for additional ones to add to the list. In this way, the findings from the previous task were validated. At the end of the session, participants were encouraged to share additional comments and to reflect on the focus group itself.

14 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

The supplemental interviews conducted with experts covered the same general content as the focus groups. Interviewees were first asked what they consider to be the most urgently needed innovations in LTC. They were then asked to describe the current situation surrounding the area of LTC in question, and lastly, to suggest a way forward to bring about an innovative solution to address the challenge.

3.1.3 Analysis of data The focus groups were audio recorded and the note-taker was tasked with taking detailed notes of the focus groups sessions. Detailed notes were likewise taken of the expert interviews by the interviewer. The project teams in each country summarised the findings from each of the focus groups and the interviews into a national report, which serve as the source documents for the data presented here. The majority of the analysis presented here is derived from the focus group findings. The expert interviews were intended to supplement the focus groups, as the issues raised by the interviewees did not undergo the same prioritisation through group consensus as occurred during the focus groups, and because the number of interviews varied widely from country to country (see Annex III). A selection of the most salient findings from the interviews is presented in this chapter in the form of text boxes containing paraphrased excerpts from the interviews.

3.2 Comparison of priority areas for innovation in LTC by country and care regime The diverse stakeholders assembled for the focus groups and interviews addressed a broad range of topics related to social innovation in the area of long-term care and social support for older adults. The outcomes of the focus groups form the basis of the analysis presented in this section due to the fact that the topics discussed in detail were selected through a voting process, whereas the findings from the supplemental expert interviews did not undergo a similar vetting process. Findings from the interviews that are particularly salient are presented in text boxes throughout the sub-sections of this chapter.

The discussion surrounding the range of topics focused on the existing challenges confronting the planning, organisation and delivery of services in long-term care in the respective country contexts, and on the ways in which the situation could be improved both through traditional and innovative means. In reviewing focus group participants’ responses to the question, “what innovations in long- term care do you consider to be most urgently needed?” a number of commonalities and divergences emerge across countries and care regimes, as depicted in Table 2 below. Although we are wary to give too much weight to the distinctions in priority areas by care regime – and even by country – given the small sample size, we are confident that the familiarity of the experts recruited as focus group participants with the long-term care systems and services in place in their respective countries offer valuable insight into country-specific needs for innovation.

Most striking is the unanimous call for integration of services, whether by means of case management or other mechanisms, an indication that fragmentation of services is a challenge facing countries irrespective of care regime and that development in the direction of systematic integration is desirable from the perspective of a wide range of stakeholders. In at least one of the countries in each of the care regimes represented in this study, innovation in the area of user empowerment and education was also cited as a priority, signalling a need for programmes that increase awareness about age-related conditions and provide coping strategies and practical skills

15 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care for older people and their informal carers. The call for greater empowerment of informal carers in particular also demonstrates recognition of the important role played by family carers, even in countries with widely available and accessible formal care services. The need for improvements and modifications to the education and training of care professionals was also raised by focus group participants in all three care regimes, albeit with notable differences in emphasis. In Hungary, a Transition country, the development of a system of qualifications and associated training for the home care sector was prioritised, while in Germany, a Care-mix country, a broader reconsideration and restructuring of the disparate care professionals’ job profiles was deemed necessary. Lastly, in the Family-based care regime, represented in this case by Portugal, continuing education for professionals to enable the development of specific skills was called for, as was training for informal carers and family members.

In addition to these commonalities across the three care regimes, a number of areas were prioritised by focus groups in two groups of countries. In both the Transition and Care-mix regimes, participants made reference to a need for expansion of existing or development of new care services, though again, important distinctions within this area are present across participating countries. In both countries of the Transition care regime (EE, HU) and Germany within the Care- mix, increased availability of long-term care services for low-income groups and for people living in rural areas was stressed, with a view to increasing access to care. On the other hand, in the other Care-mix country of Austria, new services targeting specific user groups such as the younger old and older people with lifelong disabilities were considered pressing, as was a reconfiguration of services to account for a more holistic approach to care. In both Family-based and Care-mix regimes, the need for a change in the way that ageing and dependency is perceived was raised, with participants in both country focus groups emphasising that such a change must occur at the societal level, not just system-wide.

Despite these overlaps, a number of notable differences in areas earmarked for innovative solutions did emerge, providing further evidence that many of the challenges facing LTC systems are country-, and to a lesser extent, care regime-specific. For one, in the Transition country of Romania where the concept of LTC as such is still novel, the inception and design of a distinct LTC system was put forth as a priority. In Hungary, again a Transition country, NGOs and private enterprises – both for-profit and not-for-profit—provide a large proportion of the available formal care services. The degree to which these are subsidised depends, however, on the type of institution, with church-affiliated organisations receiving much higher subsidies than other kinds of providers. Thus, sector-neutral financing is considered an urgent priority. In the Care-mix countries of Germany, and to an extent in Austria, the concept of caring communities in which care is organised locally with the individual’s immediate environment and resources in mind, has taken root and is garnering increasing attention. The further development and diffusion of the caring community model was put forth by participants in Germany as a priority. In Italy, a Family-based country, the re-thinking of existing services to increase their effectiveness was called for, specifically the admission and referral practice to improve access and appropriate transfers along the care pathway for older people suffering from dementia in Ancona province. Portugal, the other Family-based country, was the only one in which the topic of sustainability, including but not limited to sustainability of financing for care services, was explicitly mentioned as an urgent need.

16 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Table 2 Most urgently needed innovations by country and care regime

Care regime Country Priority areas for SI

Care mix AT Case management Empowerment of care recipients & family members Ageing differently New care services DE Improve interface management Caring communities/locally-based care Mobility and housing Expansion of existing LTC services Pillarisation of financing Professional education & training Transition EE Integration and work Availability of services Empowering older persons HU Professionalisation of home care services Sector-neutral financing Financing linked to care need & services rendered Expansion of services to address accessibility Information exchange, communication & collaboration among stakeholders (incl. users) RO Design of the national LTC system Financing mechanism for LTC providers Development of LTC services for low-income adults Case management Family- IT Educating about dependency based Genuine admittance and referral services Case management ‘Proactive’ prevention PT Implementing a user-centred approach Development of integrated governance Sustainability (social, economic, financial, political) Investment in carers’ education and training Source: Outcome of the prioritisation activity undertaken with participants in each of the 15 focus groups.

3.3 Thematic clustering of priority areas for innovation in LTC Generally speaking, the outcomes of the focus groups and interviews demonstrate that, for the majority of stakeholders participating in the study across countries and care regimes, social innovation is an abstract term that is equated with improvements to existing care and social support structures. This is understandable given the fact that most of the stakeholders recruited are practitioners in the field as opposed to policy-makers or researchers, and as such, do not have the same degree of familiarity with the concept. Furthermore, this finding shows that social innovation has not yet become a key concept in long-term care, though participants in focus groups and interviews generally agreed that there would be a need for social innovation. This can be exemplified by statements of Hungarian experts whose understanding of social innovation oscillated between “fundamental systemic change” and a more pragmatic approach consisting in the “modification of the current framework” by reforms that aim at overcoming the lack of services, developing new ways of funding, and improving the quality of services (training, standards and regulation).

17 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Taking the specific priority areas raised in each of the focus groups and presented in Table 2, Figure 3 presents a clustering of the themes selected as aspects of long-term care most urgently in need of innovative solutions. The 8 themes include: support and empowerment of users and informal carers, shifting the ‘ageing’ paradigm, expansion of services, community-based care, professional education and training, integration and coordination of care services, financing and governance, and finally, sustainability of service programmes and initiatives. Each theme is described in detail in the subsequent pages, including suggestions for how to harness innovative methods to effect an amelioration of the situation in each thematic area.

Figure 3. Clustered priority areas in need of social innovation in LTC and social support

Support & empowerment of users Shiing the 'ageing' Expansion of services paradigm and informal carers (AT, DE, EE, HU, IT, PT, (AT, IT) RO) (AT, IT, PT, EE)

Integraon & Community-based care LTC Workforce coordinaon of care (AT, DE) (DE, HU, PT) (AT, DE, RO, HU, EE, IT)

Financing & Governance Sustainability (AT, PT, IT) (DE,HU, PT,RO)

Source: Outcome of the prioritisation activity undertaken with participants in each of the 15 focus groups.

3.3.1 Supporting & empowering users & informal carers The gradual shift that has taken place over the past decades in health care in terms of the doctor- patient relationship – from a paternalistic approach favouring the decision-making power of clinicians to one in which patient autonomy and involvement is increasingly valued and promoted – has visible implications for the provision of LTC services. The importance of taking a more patient- or user-centred approach to designing and implementing services was cited by the participants of the Portuguese focus group organised around the ‘Platform for Ageing’ as a critical issue in need of innovation. At present, a lack of participation on the part of users in the development of care plans persists, reinforced by the infantilisation of older persons by professionals, and to a certain extent by family members, jeopardising their autonomy and personal dignity. As a result of this lack of recognition of the role of the individual user and widespread lack of awareness regarding the heterogeneity of older age groups, services often neglect specificities of individuals’ needs and circumstances. Ideally, services would move away from a taylorised approach to one in which services are adapted to the user. The Portuguese focus group participants suggested that improving the network of home care services with social and medical assistance to avoid institutionalisation is

18 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care of paramount importance. This could be achieved through the creation of effective 24-hour tele- assistance services which are easy for users and their carers to use, involving users in the development of personalised care plans, and systematic incorporation of user feedback and evaluation of services. In addition, the creation of forums for senior citizens, social participation projects, and mainstreaming programmes akin to the Platforms for Ageing, as well as the establishment of consultancy bodies in municipalities working together with older persons and their representatives were provided as possible ways to foster a user-centred approach. Italian experts identified social innovations that promote user-centred, integrated home care policies as promising, initiatives such as co-housing (e.g. intergenerational co-housing or “building-based models of carer-sharing”), ICT-based tools to support and train formal and informal carers, and “open” community care (i.e. care that integrates home and residential care workers in a single system).

In order for projects within the community that engage older people and encourage independence and inclusion to succeed, a full-time district manager position, with dedicated financing from either the municipality or an institutional partner, would be necessary. Also, involving care recipients in ‘round table’ discussions at the district level on specific care-related topics would be a valuable way to gather input and grant greater decision-making power to the end-user. Director, Social Engagement Unit, Bielefelder Model, DE

The role of informal carers and the importance of taking their needs into account in the context of LTC provision were highlighted by the focus group conducted with non-profit service providers operating in a rural region of Austria. The participants pointed out that a great deal of pressure from family members and from society is exerted on children (mainly daughters) to take on responsibility for their parents’ care. The expectation is that everyone has the capability to ‘care,’ though this is a misconception and leads to challenges in ensuring the adequacy and quality of long- term care. Furthermore, it places a psychological and financial burden on family members who often do not have or are unaware of available support networks and who therefore run the risk of isolation and social exclusion. This is a major gap in the LTC system in terms of providing support to family members.

The burden of care on family members is one of the largest ‘silent’ social issues in Estonia today. It is not talked about in public because the people affected by it do not see themselves as a large enough group in society to have a voice. They are unable to bypass local social workers and the national legislation which states that families have to take care of their own children and elderly dependents. Head Nurse, OÜ Medendi Home Nursing Care, Tallinn, EE

It was suggested that more ‘empowerment training’ programmes need to be implemented across the region. This would require the building of networks to enable collaboration between residential care facilities and other initiatives or organisations working in the area of support for family members. It would also require awareness-raising among all parties involved, and the active involvement of the regional management, the regional government and municipalities, and the many service provider associations already operating in the area. There is also a need for more precise and more transparent administrative data on the demand for care (i.e. needs assessment) as well as the care supply in order to appropriately design and allocate services. At present, in

19 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Carinthia (one of nine Austrian regions with about 550,000 inhabitants) there are 420 associations that are active in the area of health and social care (e.g. as providers of services, social support, health maintenance), but it is not clear to local actors to what extent the services offered by the different associations overlap. A database of service providers, of the services they offer and the source of their (public) funding, was cited as a potentially highly useful tool.

An important component of user empowerment is education and awareness-raising concerning the needs of frail older people. The focus group in Ancona (IT) highlighted this point, adhering to the view that care recipients, family members (including family carers) and informal carers need to be better educated about various aspects of dependency in old-age, emphasising the need for training specifically on the topic of dementia and its effects on sufferers and family members alike. A number of participants proposed a vision of the community as a setting for training and information programmes.

3.3.2 Shifting the ‘ageing’ paradigm The focus groups carried out in Vienna (AT), and in Ancona (IT) both identified a pressing need to change the way in which individuals, policy-makers, and society at large think about and confront ageing. Participants in the Vienna focus group expressed that merely by designating people over a certain age as being ‘old’ or as belonging to the ‘older generation’, we create a division between those who are thrust into that group and the rest of the population. Because it is not desirable to be old, or to be thought of as old, people who make plans for old age and poor health are in the minority. Categorising people of a certain age as ‘old’ ignores the high degree of heterogeneity among older population groups and leads to generalisations and poor understanding of capabilities and care needs, which in turn can lead to inappropriate service design and provision. In the focus group carried out in Ancona, participants expressed the view that old age, specifically the dependency on family members and on society that often comes with it, is negatively perceived, which is due to a lack of education on the subject and a lack of emphasis on prevention and coping strategies.

In Romania, the involvement of older persons in voluntary activities could have positive effects on their mental well-being and may lead to a shift in the public image of older people and their contributions to society. President, Association for the Protection of Retired Persons’ Rights, RO

Re-defining ageing and older age involves reconsidering the services that are made available and what makes sense in terms of professional/educational profiles. Geranimation trainers, a relatively new job profile in Austria that seeks to ‘(re)animate’ older people, including those with dementia, through a range of activities (e.g. dance and computer literacy training) offer valuable services in the context of active ageing, yet they have not yet been incorporated into the LTC labour force in a systematic way, making it difficult to find employment. Bringing about a new, more positive image of ageing and old age also requires a shift at both the personal and societal level. One essential component of this process is intergenerational dialogue and exchange that should be promoted in all local communities, at the LTC system level, and at the macro, societal level. There are numerous instances of socially innovative practices and projects being implemented in Austria, Italy, and in the other countries that are attempting to re-shape the image of ageing and what it means to age,

20 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care including a project coordinated by INRCA – the Italian partner involved in this project – on promoting intergenerational solidarity in communities called “Ri-Generiamoci”. The challenge remains that while promising projects are in the works, they tend to operate on a small scale, and a nuanced, well-defined, and widely visible concept of mainstreaming ageing is still lacking.

Ageing and care should be incorporated as cross-cutting topics by municipal administrations to encourage broader visibility of ageing-related issues. Director, Social Engagement Unit, Bielefelder Model, DE

3.3.3 Expansion of services The need for an expansion of existing LTC services, and the establishment of new services was raised by participants in at least one focus group in almost every partner country. This was deemed particularly strong in rural settings, even in countries like AT and DE which have relatively well- developed LTC infrastructures. The service areas cited as being in need of expansion ran the gamut from home care, day care, to the re(arrangement) of residential care facilities, the improvement of housing options and transportation services to ensure mobility of older community residents. Focus group participants in Milan (IT) and in Bucharest (RO) added the need for preventive LTC services, stating that too much attention and too great a share of resources are directed at curative services, while prevention is being neglected despite the promise it holds for improving health, delaying illness and frailty, and decreasing demand for more costly services later on. The unmet needs of specific target groups were also raised in a number of focus groups, including the needs of the younger old and people with dementia. Although implicit in some of the discussions from other focus groups, participants in the Romanian focus group spoke directly about the need to improve LTC services for low-income seniors in particular.

There is a need to expand local housing options for older people. Even if someone is not able to live independently in their own home, they often still prefer to remain in the same area, in the same district. Barrier-free or low barrier apartments are available but are oftentimes outside the financial reach of low-income groups. Director, Nursing Care Base Mönchengladbach, DE

In Austria, in addition to a need for expansion of existing services to reach older users, especially those living in rural regions, there is also a lack of strategy for addressing the needs of the younger old seeking LTC services. People in this demographic group often suffer from some kind of mental illness, physical disability, or drug or alcohol addiction, but are not fully served by traditional LTC services. Participants agreed that a lack of good ideas is not the problem, nor is there a lack of pilot projects being implemented. Rather, the problem is that there is no central anchor to guide and assist in the development of innovations in LTC services; there is no central concept. Participants identified fragmentation of the LTC system as one of the key challenges facing current service provision and as a primary barrier to the implementation of new and scalable services. Fragmen- tation in this case refers not only to the division between the health care and social care sectors, but also to a fragmentation in regional governance and organisation of care, which in Austria varies considerably from federal state to federal state. With regard to the fragmentation between sectors,

21 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care participants stated that even within each sector, the problem of fragmentation extends to the different professional profiles. Each professional group is trained to possess very specific capabi- lities and to carry out specific, clearly delineated tasks beyond which they are legally restricted from venturing. In terms of variations in regional governance, regional laws and highly nuanced systems of bureaucracy in each of the states make it difficult to mainstream and scale innovations up beyond the local environment in which they were first conceived. The situation in Vienna, given its status as both capital city and federal state (and the most populous and most densely populated city), is somewhat different than other parts of the country.

Both of the prioritised themes to come out of the focus group conducted in the rural district of Leer (DE) highlighted gaps in existing LTC services. First, participants underlined the need for greater availability of a range of services, and for the creation of new services targeting specific groups of LTC beneficiaries. Specifically, participants stated the need for greater availability of hospice services (in fact, after low acceptance rates initially, these services are actually expanding), for day care centres to extend their opening hours, for the establishment of overnight care services (currently none exist in the district), and for services tailored to the needs of people with dementia. In addition, participants cited a lack of sufficient medical specialists in the region and medical centres offering services beyond primary care. Lastly, members of the Leer (DE) focus group cited the financing structure governing services as limiting the degree to which new services that bridge the health and social care divide can be implemented. As an example, they described the experience of a residential care facility in the district which collaborates with a local sports association to provide physical activity classes to the facility’s residents once a month. There would be interest from all sides to offer the classes with greater regularity, but neither the residential care facility nor the sports association have access to resources with which to do so. Secondly, the focus group participants in Leer (DE) pointed out the need for solutions to meet the housing and mobility needs of older residents in the largely rural region. Older people usually live in large, isolated single- family homes which are often partially empty. These single-family homes tend to be old structures, are not adequately insulated and have gardens which older people are in many cases no longer able to cultivate. Simultaneously, older people are not willing to move as they have strong ties to their homes and to their communities and for many, this outweighs the importance of accessing care. In many rural areas, small rented flats that meet the requirements of older people, are barrier-free, and are affordable are lacking. Living space which is adapted to the needs of disabled and for this reason is barrier-free is rare as well. In addition, even when such housing is available, it is often located outside of the town centre, making it difficult for residents to access stores and to parti- cipate in community life. This raises another issue related to housing, namely the lack of sufficient public transportation and other services working to ensure the mobility of older residents. In the district of Leer public transportation is limited to buses for schoolchildren, and as a result several municipalities cannot be reached by public transport. Existing services, including a ‘call-a-bus’ service operating in the district, are inadequate and difficult for people with disabilities to use. A number of mobile services (e.g. a savings bank service, which drove between the different muni- cipalities and allowed residents to conduct bank transfers locally) were forced to end their opera- tions for financial reasons. Currently, voluntary transport services for older people do not exist.

The focus group participants in Budapest (HU) raised a number of overlapping issues regarding the need for expansion of services in rural areas. Availability of services was considered a grave issue, as there is no standardised basic service minimum, as was accessibility. Participants stated that even if LTC services exist in a given rural area, there is no guarantee that those in need will have

22 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care access to them (e.g. they receive limited to no information about the services, and/or there is no arrangement for transport). Day care services for older people are subsidised only in settlements with over 3,000 inhabitants, a regulation which has been tightened in recent years. Again, the financing structure is responsible to a great extent for the lack of availability of LTC services. Hungary’s employment of normative, per capita financing, granted to regional governments post- service provision, means that the true costs of services incurred by regional governments are not reimbursed by the national government (according to the 2007 report of the State Audit Office, in 2004-2005 it covered only 66.6%), the regions do not have the resources to advance funding for services, and as a consequence the service is not available.

Similarly in Estonia, focus group participants stated that while service availability is less of a concern, access to services for people living in rural areas is often problematic. Difficulty in accessing care is coupled with the high cost of LTC services, a universal barrier regardless of a person’s geographic location.

In Portugal, the need for new integrated care arrangements beyond day care centres and residential care facilities, the expansion of home care services to improve geographical coverage, together with the improvement of the home care services network and the types of services offered to older people living at home, were cited by the focus group organised around the ‘Platform for Ageing.’ Participants also mentioned the need for an increase in the availability of assisted living facilities to meet the needs of older people transitioning out of acute care, and for intermediate arrangements that go beyond basic day care centres where, for example, people with dementia are often not actively stimulated but are merely ‘looked after’. Lastly, participants called for innovative approaches to residential facilities in which people with different levels of care need and different dependence profiles (i.e. people with mental illness, with physical disabilities, and others who are still mostly independent) are accommodated in the same facility.

In Italy, where one of the main pillars of long-term care is the privately employed migrant care worker, many innovative ideas to expand services were formulated around this care arrangement by focus group participants. They focused on the need to promote services to support both migrant care workers and the family (also in its role as an employer), especially with regard to matching of demand and supply; management of work contracts and other administrative aspects; training of migrant care workers; and recognition of informal carers’ skills. A general request is that services should be planned at the national level, but implemented considering local/regional specificities, in order to guarantee that a Minimum National Level of service quality is achieved across the country. The experience of the Piedmont Region in this field and the national programme of a service to support care workers privately hired by families are experimental programmes aiming at generating this innovative approach.

The main point of reference is always care provided at home. The role of family and of informal, often migrant carers must be better evaluated. The formal recognition of the role played by migrant carers would also involve the recognition of their training needs and assessment of their existing skills. An integrated system that actively incorporates all the resources available to the older person, including family members and migrant carers is needed. Project Manager, Eurocarers & Anziani e non solo Cooperative, IT

23 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

In Romania, participants in the urban focus group underlined that preventive services require closer collaboration between the health and social care elements of the LTC system: primary doctors, geriatricians and social workers should work together to evaluate and treat health conditions that become more common as people age. Public health practitioners have traditionally focused on health screenings, paying limited attention to ageing, because the assumption is that screening plays a more important role in detecting early signs of need for care. The development of LTC service networks for low-income older people living in rural areas was considered the issue most urgently in need of social innovation in Romania by experts from the focus group carried out in the rural areas of Bucharest-Ilfov Region. Low-income seniors represent a complex group of older adults who frequently have chronic medical conditions for which they often fail to receive the recommended standard of care. This group also has limited access to health care. Thus, specific mechanisms within and beyond social health protection and LTC schemes should be developed in order to address the potential risk of impoverishment of low-income seniors. As the older population grows, the need for affordable housing for low-income older people will also increase. The focus group participants considered that the policy steps taken so far to address the needs of low-income groups have been inadequate and inconsistent, with a number of factors responsible for this situation: the lack of coherence in the field, personnel fluctuations within the system, and importantly, a lack of material resources.

Among the most important drivers in the development of LTC services in Romania are social economy enterprises such as mutual aid cooperatives and pensioners’ associations. Some of these entities are powerful, well-established bodies that possess sustainable financial resources and stable territorial structures. The mutual aid organisation of pensioners (Casa de Ajutor Reciproc a Pensionarilor - CARP) is an illustrative example. It provides a system of mutual help for older beneficiaries, as well as their family members. Although the CARPs model is described in the Social Europe Guide, its potential as a main actor in the design of a national LTC system continues to be overlooked by policymakers. Coordinator, Institute of Social Economy, RO

The dual coordination of LTC in Romania by both the social and health care sectors induces difficulties for cooperation. In rural areas the health system has low coverage and the social assistance system has no dedicated staff for the older people, due at least in part to a restructuring of public services and employees. For these reasons, action to meet the needs of low-income older people is insufficient. The involvement of local authorities in solving problems of low-income seniors is primarily based on the budgetary resources, often limited. The system of residential facilities has a limited number of places that do not cover the actual needs. The National Strategy for Promoting Active Ageing and Protection of the Elderly 2014-2020 for Romania, which is also a prior conditioning for the access to EU funds for the period 2014-2020, does envisage the establishing of a long term, accessible and quality system of LTC services, both in urban and rural areas. It remains to be seen if and when the strategy will produce the desired effects.

Measures were proposed by focus group participants in each setting for the purpose of bringing about successful expansion of services in the areas detailed above and to foster the creation of new and innovative solutions to care needs. In Austria, in order to develop new care services, participants agreed that first and foremost, an overall concept of LTC services needs to be defined based on input from a wide range of stakeholders. Additionally, this new concept should take into consideration the role of other sectors and institutional factors, e.g. the educational system and

24 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care financing needs. The new LTC concept or model should be holistic in nature, with a view to adapting or developing new job profiles that overcome the strong division of labour (i.e. rigid guidelines in terms of skills and responsibilities) that currently characterise the LTC labour force. In order to address the challenge of fragmentation affecting the Austrian LTC system, new policy strategies are needed along with reform of current administrative procedures. Participants stressed that getting the federal states on the same page in terms of the organisation and financing of care would be a crucial step. Specifically, the numerous financing sources should somehow be harmonised and made more transparent. In the course of the discussion on this subject, the focus group facilitator suggested bundled budgets for specific clients/target groups as an alternative financing mechanism. Participants welcomed the idea, but maintained that it would be difficult to implement given the different laws that exist in the different federal states. In Italy, participants felt that the concept of LTC should be widened to include services focused on prevention, and cited the creation of community centres offering physical and social activities to older people as a solution to be explored.

Addressing the scaling up of innovations in LTC service provision, participants in multiple focus groups cited a need for increased and dedicated funding and investment with an eye on sustainabi- lity. This would require funding pilot projects for extended periods of time in order to give project implementers time to properly roll-out services and conduct effective evaluations. Given the budgetary constraints facing financial decision-makers, they often have to weigh whether to fund social innovation initiatives or to channel more resources towards ensuring quality care, meaning ‘care’ with a capital ‘C’, with the latter often winning out. Such decisions and balancing acts should be guided by the new, overall concept of LTC detailed above.

The consideration of cultural differences is a central topic when structuring LTC services to ensure quality of life. It requires the establishment of a ‘process’ sensitivity that runs through all service components. Executive Chairman, Kuratorium Deutsche Altershilfe, DE

To improve financial mechanisms for low-income seniors at the national level, the focus group participants in Romania maintained that funds from private sector must be sought and incentives for the development of such services should be implemented. Legislation stipulating dedicated funding for services for older persons was suggested as a solution in order to develop LTC services for low-income seniors. Once funding has been secured, cost effectiveness analysis is the next step to be carried out and this requires a correct assessment of needs, the training of specialised staff, and periodic evaluation of activities. The coordination and coherence of LTC services for low- income seniors should be built on effective and efficient management and administration, on fiscal sustainability and on the ultimate responsibility of the state. In order to develop LTC services for low-income seniors at the organisational level, active and sustained cooperation is needed among the various actors from public and private actors at the county/local level, and from health and social care actors. A formal partnership would allow better information and duly raise awareness regarding LTC services availability and eligibility for older people in low-income groups. The role of non-profit organisations and volunteers in providing services at low-cost should also be examined.

In the German and Hungarian contexts, the expansion of services is inextricably linked to the availability of additional funding, and according to participants can only be achieved with an

25 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care increase in the level of cooperation between the different stakeholders and authorities involved in the organisation and provision of care. In addition, an expansion or reactivation of transportation services for older people is necessary, again provided that sufficient financing is ensured. In the rural areas the reactivation of the so-called “district nurse” is desirable. In the past, communication and cooperation between the district nurse, physicians and the municipality ensured appropriate care for every older resident. The district nurse was informed about the living conditions of older citizens and/or people in need of long-term care. Addressing the topic of housing of older residents in rural areas, focus group participants suggested the adaptation of a housing model referred to as “living for help,” a model commonly adopted in cities with many students. In rural areas, instead of catering to students, the target group could be apprentice workers or anyone looking for low-cost housing and who, in exchange, would be willing to take on household tasks. The municipality or the district should be involved in coordinating such an initiative. Also to prevent social isolation of older people living alone, a service in which volunteers visit older people at home and do outreach would be desirable, as would the implementation of a ‘meals on wheels’ programme.

Focus groups in Germany, Portugal and Estonia all mentioned the development of services providing technical support and training to older people. In rural areas of Germany, cooperation between the municipality and local broadcasting and television stations could work to enable older residents to stay in contact with friends and family members who live far away. In Portugal, investments should be made in new ICT applications that support care professionals in providing care and that enable older people to remain at home longer (e.g. telemedicine and tele-care systems). In Estonia, the low level of digital literacy possessed by the majority of older people renders the likelihood of success, not to mention the appropriateness of ICT solutions in LTC, limited. In order to be able to take advantage of the opportunities offered by tele-care and other ICT-based services, training programs to build digital competencies among the older generation should be implemented.

3.3.4 Community-based care The focus group carried out in the city of Dortmund (DE) prioritised community-based care. The idea of implementing ‘Caring Communities’ in Germany is not new. Adhering to the principle of ‘ageing in place’, a strengthening of local care structures involving all relevant stakeholders (pro- fessionals and volunteers) and the implementation of a needs-based approach to care is taking place. Traditional services are less and less accepted (especially nursing homes). Broader networking and pooling of long-term care services at the community/local-level, to form what is being referred to as ‘caring communities,’ could enable older people to live at home longer.

The concept of ‘caring communities’ should not be misconstrued as a new function of society. What the public sector can do is enable the preconditions needed to ensure the success of caring communities. The creation of affiliations, the practice of taking responsibility and investing trust in others remain the tasks of citizens. Professor, Public Law and Gerontology, Protestant Polytechnic Freiburg, DE

Currently, however, there is no municipality in Germany where a caring community has fully been implemented. This is due to a number of factors, including a lack of willingness and competence on the part of some municipalities to implement local care structures, an under-developed definition of what is meant by ‘local’ (does it apply to rural areas, city districts?), a lack of cooperation within

26 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care different municipality and regional departments, and finally, a lack of funding instruments for supporting local care models.

To overcome these barriers, a number of areas for innovative solutions were proposed. In rural areas, weak infrastructure in long-term care could be compensated for by creating alliances between different towns, and expansion of local health care structures should be undertaken by implementing subsidiary medical practices in rural areas, or by employing a ‘district nurse model’ in lieu of recruiting general practitioners. First and foremost, in order to create sustainable long-term care structures at the local level, thoughtfully designed financial mechanisms are imperative. One possible way to structure financing would be to provide municipalities with long-term care budgets, with funding channelled from long-term care insurance funds. This would strengthen the steering capability of the municipalities and resources could be allocated on a needs-basis according to the amount of people in need of care and their degree of care need (in the respective municipalities. Additional proposals for bringing about community-based care included building neighbourhood networks, and establishing ‘round tables’ on long-term care issues to support lasting cooperation between different stakeholders within municipalities.

3.3.5 LTC Workforce Several issues related to the education and training of professionals working in the LTC sector in Germany, Hungary, and Portugal were raised by focus group participants in these three countries, with the topic being tackled specifically in the focus groups carried out in rural settings in Germany and Hungary (two in Germany, and one in Hungary), indicating that this theme may be a particu- larly salient issue for service delivery in a rural context. In Germany, participants addressed two fundamental concerns. First, that more often than not, health care professionals, specifically GPs, are insufficiently aware of the non-medical needs of older persons and of the services available to them within the broader LTC system. This is a missed opportunity as GPs are in most instances the first point of contact for older patients. On the other end of the spectrum, specialists working in the various areas of LTC have insufficient knowledge about the care being provided by their colleagues in other professions, all of which leads to a silo-like approach to care provision, a lack of coopera- tion and coordination between professional groups, and contributes to the fragmentation of LTC (this phenomenon is likely also the result of fragmented governance of the LTC system; a vicious cycle in other words). Similarly, in Portugal, participants reflected that often, professionals do not possess the skills and knowledge to perform more demanding tasks beyond their narrow speciali- sation. This is especially true in the case of medical professionals and rehabilitation therapists. Secondly, the German focus group participants expressed concern that the education profiles/professional qualifications of employees working in the sector has not kept pace with the increasing differentiation in treatment and service options available to older people, and a dire shortage of qualified professionals has been the result.

Differentiating between ‘skilled’ and ‘unskilled’ care workers fosters the existing hierarchical system within the health care sector and should be avoided in LTC. It is more useful to create job profiles according to the care tasks required. Quality of human or social support must not be measured in educational qualifications. Professor, Public Law & Gerontology, Protestant Polytechnic Freiburg, DE

27 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

In Hungary, a shortage of qualified home care professionals is of particular concern, as currently care providers are incentivised to increase the volume of services, leading to a focus on quantity at the expense of quality of care. As part of a larger effort to improve both the external and internal image of the sector, participants in both Hungary and Germany stated the need for a greater degree of professionalisation of LTC work.

Participants in the focus groups suggested several ways in which the situation might be improved. First, training modules in geriatrics and in LTC systems structure and available services should be made available for all medical clinicians, including GPs. Second, to improve availability of LTC services in rural areas, policy-makers should consider (re)instituting the so-called ‘district nurse’ professional profile in the absence of a sufficient supply of primary care physicians. Another strategy to combat the skills shortage in LTC provided by experts in one German focus group is for care providers to offer employees a range of incentives, e.g. involvement in decision-making processes, support in reconciling family and work obligations, and vouchers for membership in sports clubs.

Greater awareness and involvement on the part of GPs in the country is necessary. By being more involved in identifying and helping people who are currently developing symptoms of ill health, family doctors could facilitate early diagnosis and appropriate case management. This would also help to avoid unnecessary hospitalization and inefficient spending of public money. President, Association for the Protection of Retired Persons’ Rights, RO

Professional profiles and corresponding competencies across the LTC sector should be reviewed to determine which professional groups are responsible for what types of care services, and what qualifications should be required. Following revaluation of professional profiles in LTC, reforms to the education system would also be needed. As mentioned above, the existing professional groups currently operating within the LTC sector do not cover all necessary expertise – there are many fields which could also be covered by social work professionals, for example. The Hungarian focus group participants recommended that ICT training be provided to home care professionals in order to enable them to take advantage of technological innovations in the field, including tele-care solutions. Use of such technologies could reduce the visitation burden on professionals and enable them to focus on providing quality care to their clients. The Portuguese experts proposed that professionals be required to enrol in continual training to develop their skills sets. In light of the shortage of care professionals, the role of volunteers in providing assistance to older people should also be considered. The contribution of volunteers could be formalised through the provision of official training courses for volunteers interested in working with older people, by increasing monitoring structures for volunteers to ensure the quality of their work and the safety of beneficiaries, and to support the mental health of the volunteers themselves.

3.3.6 Integration and coordination of care Participants in Romania, Germany, Italy and Hungary identified integration and coordination of LTC services to be a priority issue in need of innovative solutions. In each of these country contexts, the fragmentation of LTC between the health and social care sectors, and the lack of coordination and cooperation among stakeholders operating in both fields is a major source of concern, leading as it does to duplications as well as gaps in service provision.

28 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

In Romania, innovation would be needed in the design of a national LTC system with a strong com- ponent geared towards early identification of need, with clear guidelines dictating the understan- ding of terms, roles and responsibilities between the different actors involved. The participants acknowledged the fact that several institutional social and healthcare services address the needs of persons in need of long-term care. Most of these services are provided under the umbrella of regulations for disabled and older persons. And even some of these services may be considered as components of an LTC system, a functional system should require not only residential services but also home care services and day care services shaped for the needs of beneficiaries. Healthcare and social assistance are both components of the welfare system. However, the present reality is the result of the distinct design and provision of healthcare and social services, especially in the case of community services. A certain level of integration does define the long-term care services provided in residential facilities. According to the view of participants, the latest initiative in this area – a national active ageing strategy – has shown that policy-makers are not entirely focused on ageing, active ageing and related issues. At the time of the focus group discussion, participants expressed the opinion that the initiative lacks an action plan. This indicates that ageing and care for older people are more important issues for providers (public or private) and for organisations representing users, than for policy-makers at the national level.

In Germany, focus group participants identified the theme ‘interface management’ within the context of integration and coordination of services as a pressing area for innovation. According to participants, challenges in creating coordinated interfaces across different service areas are caused by the fragmentation, or ‘pillarisation’ of the wider LTC system. The challenge is particularly acute in the case of in-patient and out-patient care, and has been known to lead to the provision of inappropriate or discontinued care. There is a lack of uniformity of data systems used by individual physicians, hospitals, residential care providers and home care providers and strict data protection rules create a lack of data transparency and hamper the cooperation between the different stakeholders. This dilemma also extends to the information that is presented by providers and public institutions to users and their family members. The latter can find themselves overwhelmed with different information presented on various platforms by various sources. The lack of interface coordination contributes to mistrust among different actors within the system. Initiatives to improve cooperation within the LTC system often fail because each party accuses the other of only being interested in increasing their profit margin. The experience of the focus group participants has been that different stakeholders (e.g. physicians, institutional care providers, health care insurance companies and policy-makers) are not interested in modifications of the system, or rather; no one is willing to take the first step. Furthermore, adequate opportunities for local exchange and an institutional body in charge of organising networking activities are lacking.

As was pointed out by the focus group participants in Budapest (HU), an important aspect of coordination of care is user involvement, yet an information asymmetry persists which does not allow the people in need of care to make informed decisions about the care they receive. Although local governments have websites and leaflets informing residents on available services, this form of communication does not seem to be sufficiently effective. At present, ICT devices are largely inaccessible to older people.

Case management was discussed in several focus groups as a proven and highly effective tool for advancing integrated care. It was ranked a priority issue in the focus groups carried out in rural settings in both Austria and in Romania, and in the focus group organised in Milan in Italy. The lack

29 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care of standardised case management is common to all three country settings, and raises significant concerns about the systems’ capacity to ensure continuity of care, particularly in instances of older patients transitioning from in-patient care to residential care or home care. In Austria, despite the fact that hospitals in the area employ discharge managers whose responsibility it is to coordinate care for patients leaving hospital, their role ends once a person is discharged. This situation is problematic for residential and home care providers as well, as they are often given little to no time to accommodate patients requesting their services. A publicly provided service in the region of Carinthia does exist which is supposed to assist older people and their families in managing their care needs, but the service has been ineffectively organised and is inadequate in meeting the needs of residents.6 Similarly, in Italy, focus group participants pointed out that a ‘global’ view of care need and appropriate services is not taken, and as a result, care provision is highly fragmented. The overwhelming cause of this fragmentation is a bureaucratic system that continues to separate health and social care services, including the funding mechanisms for both. In this country, in order to promote social innovation, policy makers should focus more on users and their specific needs. Two of the innovations most frequently mentioned as “urgently needed” are the introduction of case management (stressed especially by the Milan focus group) and an appropriate admission and referral system (addressed in detail by the Ancona focus group), meant in this context as a more personalised approach to clients to realise case management. In this respect, ‘single access points’ and ‘open’ nursing homes have been indicated as promising examples of social innovation in long- term care provision. The ‘Up-tech’ and ‘Family nurse’ experiences, analysed in-depth as case studies in an earlier task of this study, are two promising initiatives which focus both on case management, with one main difference: while ‘Up-tech’ promotes an idea of public governance for case management, the ‘Family nurse’ project is a fully private solution, run by a social cooperative (Finisterre).

In Romania, the absence of case management is due less to fragmentation of the system than to a general lack of resources – a situation that varies from region to region – with which to fund additional staff to fill case manager positions, as well as to the lack of special recognition in legislation of the specific needs of the older population. Participants acknowledged that caring for older adults requires a multidisciplinary approach and should include a primary care provider who coordinates care with other team members, including pharmacists, nurses, geriatric practitioners, and other health professionals. The current legal provisions for social assistance and healthcare do not clearly regulate case management for older persons in need of long-term care. As a result, institutions in both sectors have difficulties in cooperating for the benefit of the end-user. A better approach would be to design interventions and services at the local level, in proximity to the individual and his/her environment. Social workers do not receive specialised training to handle the needs of older people, and the collaboration between social workers and healthcare professionals is mostly informal.

6 The Care and Health Service (Pflege- und Gesundheitsservice, PGS).

30 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Integration of LTC services is an important issue in Estonia. Currently, the duplication of data collection, together with overlaps and gaps in services between the social and health sectors is widespread. Integrating social care and healthcare systems has the potential to save money and time, not least by adjusting the job profiles of different professional groups. Lecturer, Tallinn University, EE

To achieve an integration of long-term care services in Romania, the focus group participants had the following suggestions. First, there needs to be consensus concerning the terms among central and local policy-makers and practitioners. Second, there needs to be greater involvement of policy- makers in the system design. To develop a long-term vision concerning a sustainable system should be the most important political goal. The system should ensure access to appropriate high-quality services when required for. As important stakeholders, providers expect flexible and clear guide- lines regarding the financing and responsibilities between the two parts (social and health care), as well as between the central and local level of provision. Several times during the focus group, participants emphasised the fact that the state is the main actor that should develop and coordinate the strategy for the national LTC system. Participants supported the idea of a top-down approach in the construction of the system, albeit with the involvement of stakeholders at the regional and local levels, including user representatives. Second, a coordination of legal provisions between the social and health care dimensions of long-term care and an improved cooperation at the centralised level needs to be instituted. Third, in order to be flexible, progressive and able to respond to peoples’ needs as they grow old, improvements in the data infrastructure and in the transparency and use of data needs to occur. Only after this is accomplished can needs assessment and appropriate care planning take place.

In order to address the lack of coordinated interface management in Germany, an analysis of the current state of affairs and of existing processes needs to be carried out with the involvement of all stakeholders. Interface management cannot be implemented ‘top-down’ but rather needs to occur from the ground up. Local actors have to be involved and local alliances should be implemented which provide stimuli for legislation. In order to initiate the process of collaboration and exchange of information between stakeholders, focus group participants strongly recommended that is necessary to organise networking instead of waiting for the single actors to organise themselves. They suggested the creation of one institutional body that is responsible for networking and management of interfaces across the different areas of LTC. This body needs to possess and be able to disseminate knowledge about all regional aspects and statutory regulations of the system. Other participants suggested the creation of an online platform on which information is easy to understand for a range of stakeholders, including users. The development of a new professional profile in ‘networking competence’ was also proposed. People trained in this area could act as navigators and points of contact for the different professional groups working within the system. People assuming this role could help to lessen the mistrust among disparate stakeholders. To reduce the complexity of information within the system, focus group participants in Germany also suggested raising the ‘system intelligence’ through a kind of internal case management: every provider interface (e.g. physician hospital, residential and home care service) would be connected through an inter-sectoral data system. This would only be possible via widening data protection rules. A first step could be to widen data protection rules within single organisations. Lastly, in order for an integrated LTC to be achieved, legal frameworks regulating the financing, organisation

31 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care and delivery of care need to be instituted, and guidelines for transferring successful strategies between municipalities need to be developed and legislated.

The most effective way to bridge the information gap between older people and care professionals, as reported by focus group participants in Budapest, is by making house calls. The participants reported many positive experiences in this respect gained from earlier projects. A few thought that personal visits were not feasible on a national scale, while others considered that they could be done by involving students, volunteers and participants in the public work programme. In addition, the galvanising of GPs would be especially important as they are in continuous contact with patients, and could immediately inform them of available LTC services when the need arises. Cooperation is a legal obligation for GPs, but it is very rare for doctors to initiate a dialogue with the social care professionals.

With regard to the developments in the area of case management in Austria, Italy and Romania, despite the lack of standardised case management, innovators in this area exist in all three coun- tries, and encouraging local-, regional- and national-level policy-makers to draw on the successes of these isolated good practices was suggested as a feasible way to begin the mainstreaming process. There are many grassroots non-profit organisations that work bottom-up and are closer to and have a better understanding of the target population. Transferring the service models from these organisations within the framework of pilot studies would be one way to disseminate good practices. In order to be successful, pilot projects need to have dedicated funding for longer periods of time than is currently usually granted period, with 3 years proposed as a good basis for laying the foundation for scaling the model up. Lastly, the point was raised that decision-makers in the policy arena need to be made aware of the work that is already being carried out by many of the non- profit social care organisation in the region. Evaluation, publication and dissemination of the results, the successes as well as the challenges need to be integrated into these organisations’ strategies. In Italy, the national LTC fund is pushing for better coordination and integration of services and could also be used to drive the case for ‘case management’ at the national level. In Romania, collaboration between local administrations, religious organisations, NGOs, primary doctors, would need to be formalised in order to lay the groundwork for case management.

Also addressing the theme of case management, the focus group carried out in Ancona (IT) representing one of the country’s central regions, focused on the admission and referral system for patients with dementia which has been in place in the municipality since 2007, and which began as a pilot programme and successfully transitioned to enjoy permanent status. The concept behind the programme is to provide users with a single point of access to care services, where needs are individually assessed and care plans are tailored to meet these needs. Despite the programme’s success, the service faces challenges in providing effective services due to the underlying fragmentation between health and social care services endemic to the Italian long-term care system, and due to a lack of resources dedicated to operational costs, including funding to retain and train staff. According to focus group participants, holding joint training sessions for staff coming from both the health and social care sectors, working to improve the continuity of care for older people transitioning from one care setting to another, and further developing appropriate outcome measures with the involvement of all relevant stakeholders is needed to foster effective case management in the region.

32 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

3.3.7 Financing and governance

In the focus groups conducted in Nyíregyháza (HU), in Bucharest (RO), Norderstadt (DE) and in the Lisbon (PT) focus group organised around the ‘Platform for Ageing’, the subject of financing and governance of LTC was directly addressed in the prioritisation of themes exercise. This theme, perhaps more than any other, is closely tied to several of the other eight themes, including ‘Integration and Coordination of Care’, ‘Sustainability’, and ‘Expansion of Services’, pointing to the fact that appropriate financing mechanisms and effective governance at the macro-level are essential for a well-functioning LTC system that succeeds in meeting the needs of residents. Within the theme of Financing and Governance, the different country focus groups focused on a number of different sub-themes. In Hungary, participants pinpointed the low wages of LTC professionals, the lack of sector-neutral financing for services providers, and a general lack of sufficient state resources allocated to providers as key challenges. The Romanian focus group participants cited the uneven distribution of public financing allocated to individual beneficiaries versus service providers that currently characterises the system, as well as the current financing mechanisms governing home care which result in fluctuating reimbursements for providers and confusion with regard to different types of services (health versus social care services) and corresponding state funding. In Germany, a challenge in need of innovative reform is the supply- rather than demand-driven financing of LTC benefits and services, due to the highly fragmented or ‘pillarised’ nature of the LTC system. Lastly, in Portugal, focus groups participants identified the fragmentation of financing mechanisms for LTC services as symptomatic of the lack of unified policies governing LTC planning and delivery, and leading to a lack of same in practice.

In Hungary, the low wages of professionals working in LTC, particularly of those working in social care, have led to a shortage of qualified personnel and to the low prestige afforded the sector as a whole. Participants also highlighted the inadequacy of public funding granted to service providers as leading to difficulties on the part of providers in delivering appropriate and adequate services. The service volume-based financing mechanisms currently in place mean that while services are reimbursed by the state, funding levels do not take the operating costs of providers into account, resulting in inefficient resource allocation and budgeting and irrational service planning. In addition, the lack of sector neutrality in Hungary has a strong negative impact. This phenomenon of unequal funding between public, Church-affiliated NGOs and the remaining independent sector (private non-profit and for-profit organisations) is not restricted to the social sector but here it is particu- larly hampering the development of cooperative structures or at least fair competition.

Speaking of the imbalance between public funding granted to beneficiaries versus providers, participants in the urban Romanian focus group stated that, as a result of this reality, social care providers (both public and private) are often antagonised. Existing financing mechanisms allocate funding for only a limited number of public and private providers, unevenly distributed between rural and urban areas (more to the point, between Bucharest and the rest of the country). More often, participants claimed that public providers receive the majority of the public subsidies to cover their operational costs and expressed the view that local authorities should not be allowed to become monopolistic suppliers of social and health care services. In the case of home care services, a number of the focus group experts stated that it is difficult to distinguish between health and social care services, and quite often the funding difficulties of social services are the result of inefficient allotment and spending of public resources. The allotting of funds for home care providers is revised every 3-6 months, but this administrative procedure is not correlated to the

33 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care needs of beneficiaries and obviously creates difficulties in operating and managing social care organisations.

In the Norderstadt (DE) focus group, participants highlighted that LTC benefits are not demand- oriented but rather follow fiscal guidelines and national legal standards governing benefits. This induces the provision of similar and overlapping benefits in different areas of LTC which leads to confusion on the part of beneficiaries regarding which benefits they can apply for within which pillar of social services. Aside from making inter-sectoral cooperation difficult, the creation of needs-based service offerings is hampered. Participants emphasised that the fundamental problem is the lack of a needs-based financing of benefits and services. The multiple reforms of the German LTC system in recent years have not led to improvements in financing structures, instead, the complexity of the system has only increased, with the result that now neither the representatives of the health care insurance companies and LTC insurance companies nor the people in need of care have an overview of the range of benefits available under the different pillars of the system. This leads to unmet needs despite the fact that adequate funding and services do exist. Participants of the focus group provided the example of the organisation of care for people with dementia as a direct consequence of the pillarisation of the LTC system: in instances in which people suffering from dementia are admitted to hospital, hospitals are capable only of seeing to their acute care needs and cannot accommodate other needs associated with their condition.

In Estonia, social support is often seen only as a cost or an expense by the authorities. As most budgetary decisions are made on the basis of a balance sheet and quality of life is not considered a hard value, social support is underestimated in terms of the benefits it has for society and the economy as a whole. Lecturer, Tallinn University, EE

In order to counteract the challenges of financing and governance described above, participants in each respective focus group suggested a number of measures, innovative and otherwise, specific to their country context. In Hungary, these amounted to increasing wages for professionals working to provide LTC services, and the introduction of a model to enhance career opportunities over the life- cycle with built-in incentives for professional development, in order to begin to address the low prestige associated with working in the sector. In addition, it was suggested by participants that in order to organise and implement services that are needs-oriented and cost-effective, the current needs assessment forms need to be re-evaluated and revised. Lastly, in order for better practices to be implemented successfully, there is a need for improved communication between policy-makers and practitioners. This communication would be aided by increased focus on research into best practices and an improvement in the methodological rigour with which such research is carried out. Participants proposed the establishment of an institutional body responsible for carrying out practice-based research and evaluations (e.g. impact studies of pilot projects). Participants also suggested the creation of a forum facilitating professional coordination in which representatives of the ministries concerned, of local governments and the professions participate as equal partners.

Participants in the Romanian focus group also emphasised the need for public resources to be allocated not according to the type of service but based on a proper evaluation of beneficiaries’ needs. They also called for legal provisions that would allow public authorities to shift money to NGOs and that would stipulate a more integrated approach at the local level in the delivery of long-

34 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care term care services between health and social care sectors. To attract private sector investment, it was also proposed that the visibility and appeal of the LTC sector be advanced and that a framework for private investment be created at the national level. In addition, policy-makers need to be pressured to design a legal framework in which coordination between the health and social care sectors operating within LTC is clearly spelled out. Lastly, providers should be more active in promoting changes in raising awareness regarding the financing mechanisms, and religious organisations, civil society organisations, and beneficiaries’ organisations representing users should organise themselves and more actively promote change in the way funds are used.

In order to reduce the fragmentation of LTC funding, participants of the Portuguese focus group agreed that transversal social policies and measures (health, social, economic, employment) should be implemented at the macro-level. In order to increase cost-effectiveness and rational use of funds, the development of social policy evaluation and monitoring systems (e.g. efficacy and financial costs of certain measures) should also be undertaken. At the local (county) level, one step toward greater integration of services could include the establishment of social services commissions and social network projects.

In Germany, participants proposed shifting towards a personal budget system of financing LTC and away from the current system in which different benefits are individually funded. This would enable every user to decide for themselves which services he or she wants to make use of. A complementary measure proposed was the implementation of so-called ‘case conferences’ in which a multi-disciplinary team meet and confer with one another about individual cases of users, with the aim of offering the optimal benefit package. Moreover a common social law regulating the health care system and the LTC system, or the introduction of a ‘citizen’s insurance’ should be implemented. The ‘citizens insurance‘ model would do away with the current LTC insurance system in which public and private insurance funds operate in parallel, and instead would consolidate the long-term care insurance into one, publicly organised fund (under the current system, civil servants and self-employed persons are privately insured). The proposed model also includes changes in the regulations governing contributions to the consolidated LTC insurance fund: all sources of income, including investment income, profits and rental income would be considered in the contribution assessment under the ‘citizen’s insurance’ model. To improve the current situation regarding the complexity of the system and the confusion it causes for providers, insurers and users alike, participants stated that it would be helpful to organise workshops that together with experts, professionals, and members of the public to discuss how LTC regulations could be improved from their perspective.

3.3.8 Sustainability The Portuguese focus group organised around providers of home care services in Lisboa munici- pality (private and public providers) was the only focus group to directly identify sustainability as a priority issue in need of innovation in the area of LTC, citing a need for greater focus on sustainabi- lity in all areas (i.e. social, economic, financial, and political) related to LTC service provision. That said, sustainability as a theme was indirectly addressed in the context of ‘Financing and Governance’ and ‘Expansion of Services’ by focus group participants in other partner countries. In Germany and Austria, participants spoke of sustainability in terms of the financing of innovative pilot projects, calling for longer-term funding (3+ years) in order to allow proper implementation, monitoring and evaluation to take place. In Estonia, policymakers’ reliance on project-based work

35 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care to address a range of social challenges was perceived as wasteful because it requires the repetition of the application, elaboration and development process in each subsequent financial cycle.

In Portugal, participants expressed the view that currently, the level and nature of communication between the several sectors and institutions that intersect under the umbrella of LTC (mainly the health and social care systems) is insufficient, time-consuming and bureaucratic. This lack of inte- gration is aggravated by the lack of economic and human resources, as well as by the fragmentation of the health and social budgets. Participants underlined the fact that as a result, promising projects and programmes are rendered unsustainable due to financial cuts and/or due to the lack of sufficiently rigorous monitoring and evaluation. To address these challenges, the participants recommended the establishment of permanent evaluation programmes of projects, policies and measures. They also called for the testing of initiatives in several geographic and social contexts.

An institutional structure would be needed that behaves as an innovation incubator attracting and generating projects, around which the interests of different stakeholders can converge and which has the capacity to carry out trainings to develop skills of both professional and informal carers. Such an ‘Innovation Institute’ could mean different things in different local contexts, but in all cases there must be an institutional setting able to support generative activities, and it must involve a local coordinator/manager tasked with identifying resources and skills in the local community. Director, Welfare Department, Social Policy Observatory, Puglia Region, IT

Addressing the sustainability of the LTC system as a whole, participants in the Portuguese focus group advocated the adoption of a prevention model across social and health care policies and services, instead of adhering to the current paradigm of ‘reaction’, which is not only more costly in financial terms but also in terms of population health. Finally, participants called for increased awareness across civil society about the challenges posed by advancing age and strategies to overcome them.

36 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

4 Conclusions and policy recommendations

4.1 Drawing conclusions from the focus groups and expert interviews As evidenced by the details provided in the previous chapter of the fifteen focus groups carried out in the partner countries, the challenges facing the respective LTC systems are numerous and persistent, and while much is context specific and requires keen understanding of political and institutional dynamics, a number of common themes emerge that should spur researchers and policy-makers at the EU level to develop a unified approach to action. Foremost among these challenges is the persistent fragmentation of LTC services in most of the countries investigated, from financing structures dictated at the national level down to delivery of care at the municipal level. This fragmentation, as was pointed out by participants in several of the focus groups, has a great deal to do with the fact that LTC has only asserted itself as a sector in its own right relatively recently, and only in select countries with more advanced economies and social welfare systems. In most countries reviewed here, LTC remains an abstract concept for policy-makers and practitioners alike, hovering above and between health care and social care. The need for national policies to integrate LTC systems and coordinate services between the many stakeholders involved was repeated again and again by focus group experts.

In addition, access to services particularly in rural regions was a commonly identified concern. This was true not only in less well-developed countries, but surprisingly also in high-income countries. The latter indicates that even in such well-to-do nations, the social care side of LTC is lagging behind strictly health care related services. This is likely due to the fact that while health care is seen as a universal right for all residents, irrespective of age, investment in services required to meet the needs of older people specifically, is lower on the policy agenda. In lower-income countries, the limited availability of and access to services is not restricted to rural areas and speaks more to a general lack of public financing for social services due to the incomplete regulatory frameworks.

Other major challenges to emerge from the focus groups and interviews concerned the state of the LTC work force. Low wages and poor incentives characterise the situation of public sector employees in most countries, and due to deteriorating economic circumstances in many places, but particularly in Eastern European countries, this is leading to a critical shortage of qualified personnel. A revamping of the sector’s image is needed and this goes hand-in-hand with an increase in the professionalisation of the work force, the establishment of clear guidelines for distinct job profiles, and the creation of further opportunities for continuing education. A concomitant renegotiation of salaries for professionals is key to changing the external and internal perception of the sector and the services it provides.

At the societal level, a call for a shift in the way we perceive ageing and in the way we collectively debate and engage with issues concerning older people resonated in multiple focus group discussions. Older people are often relegated to the margins of our communities, their experiences and skills and their continued desire and capacity to actively contribute to society is neglected. Policies reflect this perception, and in order to bring about change in this area that will then permeate decision-making among all stakeholders, there needs to be open dialogue about the personal and practical challenges posed by getting older, and opportunities for meaningful intergenerational interaction and exchange.

37 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Finally, participants in several focus groups cited the need for a user-centred, demand-driven approach to LTC. This extends to the financing mechanisms used to channel funds to service providers and to beneficiaries, as well as to design and bundling of the services themselves. Focus group participants perceived user involvement in the planning of care services (i.e. needs assessment) and service design to be of particular importance. The reason for emphasising users’ needs and a demand-driven approach to LTC services was partially to improve cost-effectiveness and reduce fragmentation and overlap in the provision of care, but also in the context of an individual’s right to autonomy and the right to exercise decision-making power over his/her own care. The need for services that empower and support users and their family members was often cited.

While the focus groups provided valuable insight into the challenges facing LTC systems and potential avenues for solutions, the solutions offered mostly adhered to known best-practices within the realm of traditional services and less to what is defined as ‘innovative’. From the focus group discussions and interviews that took place in most of the partner countries, it is apparent that despite the fact that stakeholders from a wide range of professional backgrounds served as participants, they tended not to think in terms of ‘social innovation’. Participants included for the most part practitioners who think in terms of daily challenges and realities in organising and delivering the services that their institutions and organisations provide to users. Hence the focus on challenges facing LTC systems and what needs to be changed, usually by reforming existing processes, rather than what is needed to bring about innovation in the sector. This indicates a disconnect between the EU and national-level policy sphere, which tend to employ more abstract terms like ‘social innovation’, and people working to organise and deliver services at the local- and meso-level. Policy-makers cannot be blamed for using such terms given their focus on the ‘bigger picture’ in terms of policy change and development, yet the reality is that in order to bring practitioners, providers, and especially local-level actors onto the same page, a great deal needs to be accomplished in terms of transfer and exchange of knowledge and experience. Bringing about social innovation requires a dedicated infrastructure, a keen awareness of the ultimate objectives involved, as well as strategic investment in the possible pathways to achieving it.

4.2 Policy recommendations This section provides a set of policy recommendations for effecting change in LTC systems and fostering innovative practices to expand on the potential for social innovation in this sector. The proposed policy recommendations follow from the focus group discussions and expert interviews carried out in each partner country, addressing each of the themes and challenges described in the previous section. The recommendations are also informed by the discussion of the important factors driving and hindering innovation presented in Chapter 2. It is noteworthy that many of the recommendations in this section overlap with the key factor domains (see Table 1). One can only conclude that while it is well-established what the challenges and best-practices in providing care to older adults are in general terms, the devil, as they say, and as became evident from the outcomes of the focus groups, is in the details. The policy recommendations will form the basis of the next and final task of this study on ‘Social support and long-term care’ within the framework of the MoPAct project, with a view to consolidation and elaboration of the recommendations.

38 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Supporting & empowering users & informal carers

• To improve the ICT skills of older people and informal carers and enable them to take advantage of ICT enabled innovations in care, educational infrastructures should be developed and delivered at the local level, with funding from the state and the EU. Partner- ships among local administrations, schools, IT companies could favour the improvement of digital skills among older persons/formal and informal carers. • To support informal carers and integrate the care they provide with formal services, the role and contributions of informal carers should be officially recognised, and specialised training programmes should be made available. It should be noted, however, that this recognition of informal caregivers should not come at the expense of the expansion of formal services but rather should be seen as complementary.

The social innovation potential of empowering users and carers has been clearly highlighted by the specific social need of these target groups. In combination with the ‘lucky finding’ represented by live-in migrant carers who are often replacing family carers, there are a number of opportunities that should be considered: First, supporting and empowering users and carers would contribute not only to the sustainability of LTC, but to social cohesion, equal opportunities and economic develop- ment in general (key-words: social solidarity, reconciliation of care and employment; acknowledge- ment of skills acquired by caring). Secondly, and again, new types of social relationships beyond family-ties would be created, but the question is, how such a bottom-up process could be en- couraged by top-down policies. Thirdly, and with a specific focus on migrant carers, the integration of migrant carers to the formal workforce would be an opportunity for all stakeholders to trans- form what has to be considered currently as often problematic ‘new social relationships’. In any case, there would be a need for a pan-European debate about the impact of (health and) care workers’ migration in their home countries.

Shifting the ‘ageing’ paradigm

• To reinvent the concept of ageing, to encourage an active ageing model in which older people are encouraged to remain socially engaged, and to shift the public’s perception of older people as dependent, frail, and with minimal contributions to make to society, the issue of ageing needs to be discussed openly in a public forum; a variety of media channels should be used to disseminate a more desirable image; and activities that promote inter- generational exchange and dialogue and the integration of older people into the wider community should be promoted. Programmes that assist people of all ages to make provisions for the future should also be promoted. • To promote intergenerational exchange, school programmes geared towards deconstructing negative representations of growing old should be introduced. These should be organised in collaboration with local authorities, senior associations and LTC providers.

The social innovation potential of such a shift seems to be obvious. However, such a shift would be the result of social innovation, rather than a means. As mentioned, reinventing the concept of ageing needs to be based on learning from experience, offering opportunities for intergenerational exchange and bottom-up processes to transform social relations between generations. Older people in need of care and their carers are rarely in the position to initiate, lead, participate or even influence such processes.

39 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Expansion of services

• To promote independent living of older people at home, support services should be expanded in the following areas: technical support (e.g. AAL, telemedicine) which involves cooperation between traditional care providers and ICT specialists; early, preventive adap- tation of living spaces to make them barrier free; and mobile services (e.g. mobile retail, mobile physicians, delivered meals). A cooperative model, in which all parties involved share the costs of the mobile services, would be one way to finance such initiatives. • To expand services with ICT components, broadband coverage especially in rural areas should be improved and technical support systems that include non-discriminatory use of technical support systems (LTC related as well as non LTC related) need to be created. • To increase coverage of LTC services and reduce regional variation in access to the implementation of a national minimum social care legislation could be considered (for an example, refer to the LIVEAS legislation in Italy, a concept introduced by law in 2000, but yet to be implemented).

The social innovation potential of expanding formal LTC services can in the first place only be realised by means of significant short-term social investment that could be legitimised by an important mid- or long-term social return on investment. Addressing social need would in this case imply reconsideration of the traditional way of delivering services and to allow for bottom-up processes to strengthen new types of organisations and appropriate funding mechanisms. Expansion per se may not be a sign of social innovation, neither would the mere extension of ICT components be socially innovative. The way in which further LTC development will be linked to processes of co-design and co-creation of services and ITC deployment will be crucial.

Community-based care

• To create ‘caring communities’ the competence of developing the care infrastructure should be transferred to the local-level (municipality, district, etc.). Bringing together relevant stakeholders and developing networks is crucial to developing competencies at the local level. The care conferences implemented in Germany are proposed as a model to follow.

The social innovation potential of new local care networks is promising, but at the same time ambivalent in that it might be in conflict with the general expectation of equal opportunities, equal access and universal standards. Still, the bottom-up process driven by local stakeholders in LTC remains crucial, but needs to be underpinned by legal and financial incentives that allow relevant organisations to act and to transform traditional relationships into platforms to develop structures and processes appropriate to satisfy local needs.

LTC Workforce

• To improve the image of LTC both internally, among employers and employees, as well as externally, policy-makers and professionals working within the sector should consider raising salaries; this would not only serve employees well financially, it would also demon- strate to the public that care work is work to be valued and respected. In the same vein, employers should make a point of celebrating daily successes. Support services for both formal and informal carers should be developed, including occupational health and safety,

40 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

and informal care and work reconciliation related benefits (e.g. respite care) should be expanded. • To promote a user-centred approach to home care, the personal assistant model, currently in use in DE and AT for the care of people with disabilities, should be considered. • To promote a more holistic approach to care provision, specialised training for professio- nals, but also for informal caregivers, beyond the basic task performance is recommended. Long-term care users often need more complex treatments of rehabilitation, including medical care, physiotherapy and mental health intervention, which most professionals are not qualified to do. The extension of new job profiles explicitly developed for the LTC sector (‘community nurses’, ‘socio-geriatric attendants’, etc.) could contribute to the development of a more defined holistic approach.

The social innovation potential of raising salaries alone is relatively low. First of all, social innovation would be needed to define staff in LTC as ‘LTC professionals’. Current health and social care professionals rarely develop an own identity in LTC, but remain rooted in their original professional profiles, respective hierarchies and specialisations. Would it be a first step towards social innovation if these hierarchies could be reframed by new types of relations between pro- fessionals, organisations and sectors? Only a few examples of such trends have been found. Yet, in order to provide LTC to the growing number of people who will need it in the future, strategies have to be found to recruit and retain professionals for this sector that faces already difficulties to attract appropriately trained staff. As said above, higher salaries may be one facet of such strategies, but many other organisational and procedural features need to be tackled before.

Integration & coordination of care

• To reduce fragmentation between the health and social care sectors, policy-makers could consider establishing a ‘model region’ that could serve as a long-term care ‘capital’ within which integrated LTC services are provided and lessons learned are widely disseminated; and which can serve as a showcase and pilot setting for the implementation and evaluation of innovative solutions. • To improve care planning and increase the efficiency of care services (e.g. reduce super- fluous care services and ensure coverage of diverse needs), data on care needs and avai- lable services need to be in place. This requires addressing existing ethical, legal and bureaucratic obstacles, including patient privacy and inter-institutional data sharing policies. • A proactive approach to the use of existing and the development of potential social capital is of utmost importance not only in rural areas. There are a number of initiatives and dedicated people addressing specific challenges, but often on an individual basis or with restricted opportunities of synergetic development. This would also entail a more coordinated approach within public administration. • To improve interface management, an issue specific to many countries, a common inter- sectoral data system would need to be stipulated at the macro-level. A common social law regulating the health care system and LTC system, or introduction of a ‘citizens insurance’ are proposed. At the meso-level, a number of measures are recommended: provision of consultation structures from a single source (relevant actors are here: rehabilitation advice centres, advice centres of health and LTC insurance companies, nursing care bases,

41 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

municipalities, housing industry); provision of early out-reach counselling; needs- assessment and needs-based planning at the municipal level. • To encourage collaboration between professional groups across sectors involved in LTC provision, the development of networking initiatives following the model of the ‘platform for ageing’, the social network programme and the social counties commissions from Portugal is proposed. • To improve the coordination of care, case management should become standard practice, and a case manager job profile should be created within the LTC sector. Case managers could do a great deal to ensure that individual care plans are carefully considered and appropriate for specific needs. • To support case management services, ICT solutions should be used to facilitate access to on-line information regarding the rights and services for carers. Such technologies should be used to manage communication between caregivers and care recipients and to favour social inclusion and independent living of older persons. Examples of case management initiatives incorporating ICT components include Buurtzorg in the NL and the Carer+ pilot in Romania and Latvia.

The social innovation potential of better coordinated/integrated long-term care needs to be supported at several levels, ranging from improved relations between informal, including voluntary resources and formal services to new types of cooperation between health and social care facilities, but also health and social care policies to underpin such processes. Such a transformation of social practice would have the potential to render services more user-centred and sustainable, but tangible empirical evidence is scarce and the large number of stakeholders involved is making it difficult to activate this potential. The potential of case management/care coordination as a tool for achieving integrated care is two-fold: on the one hand, it is addressing a social need, as underlined by many participants in focus groups and interviewed experts. As such, it would just be a tool to optimise the system world of LTC in terms of ‘managed care’. On the other hand, as a job profile that links the system world and the life world of users and carers, it could become a means to improve user-centred care at this important interface by creating new types of social relations, in particular in the neighbourhood, by activating local resources (hitherto not being used), and by transforming these relationships, e.g. by creating new types of (intergenerational) networks reaching beyond traditional family ties.

Financing & governance

• To synchronise the financing of in-patient and out-patient care in Germany, the obligation of care benefits of health insurance companies in form of treatment care in nursing homes should be cancelled. With this cancellation the comparability of benefits and an opening of responsibilities of the different professions in LTC would be possible. • To ensure intelligent financial structures establish permanent LTC funds at the state level that then provide municipalities with dedicated “LTC budgets” as a way to strengthen the steering competence of the municipalities and ensure needs-based resource allocation. Also, consider introducing personal LTC budgets for individuals in need of care. • To harmonise national services and EU guidelines and standards for LTC, the creation of a centralised (national) coordination centre in each country which has oversight of the implementation of guidelines should be considered.

42 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

• To promote grassroots initiatives and decision-making at the local level, local governments should leverage the work being done by grassroots organisations in terms of the coordination and delivery of care, as such organisations are often more in tune with the needs of the communities they serve. • To increase the effectiveness of cash benefits for LTC in Italy, these need to be redesigned. Currently, the cash benefits to compensate for disability and dependency are mostly used as an income support, rather than for the purchasing of services. • To identify alternative sources of funding, public-private partnerships should be explored and legislative frameworks for PPPs developed in certain countries (e.g. DE) to improve care management and diversify care services and arrangements, including in-patient care.

The social innovation potential of grass-roots initiatives in relation to funding is rather low. In this area, political decisions and social investment by governments are needed to improve financial incentives, or at least: to remove financial disincentives for cooperation and social innovation that may transform local delivery of LTC services in a ‘caring society’. New types of relationships between the health and social care sectors, the avoidance of fee-for-service payments and the development of integrated budgets that follow the user are needed to prepare the basis for further social innovation in LTC.

Sustainability

• To successfully scale-up social innovation practices in LTC, investors should be willing to provide funding for at least 3-year pilot projects, as a shorter time period does not give initiatives the chance to demonstrate their effectiveness, e.g. in terms of their social return on investment. A central strategy for nurturing social innovation in LTC should be developed with input from a wide range of stakeholders in order to define clear objectives and enable long-term planning. • To provide evidence on the impact of social innovation initiative, implement rigorous programme monitoring and evaluation should be required in exchange for state and EU funding. • To promote research and foster innovation in LTC, international and national collaboration in research and LTC development should be encouraged; first through the acknowledgment of the complexity of the topic with respect to national contexts; second through promoting collaborative, multi-disciplinary research in the following thematic areas: financing mechanisms, quality of care, ICT usage, quality of life, professional development, informal care, etc.; and third through dissemination of findings to all professional groups, users, and the general public.

The social innovation potential of small-scale social innovations that have been highlighted by experts can only be expanded if successful initiatives are given the possibility to spread or to even become mainstream practice. Instead, we have seen a large number of such initiatives struggling with basic funding beyond the piloting period. Making the social business case from the very beginning of publicly funded pilot projects should become common practice. Furthermore, LTC reform initiatives need to become better integrated in the realm of the ‘social innovation’ discourse and related structures such as social innovation hubs, incubators, and the structural support of start-ups.

43 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

5 References

Arpinte, D. (2009) Mecanisme ale inovaţiei în asistenţa socială, Calitatea Vieţii, XX (1-2), 91-99.

Arpinte, D. (2010) Factori inhibitori ai inovaţiei în serviciile sociale, Calitatea Vieţii, XXI (1-2), 193- 202.

Billings, J., Carretero, S., Kagialaris, G., Mastroyiannakis, T., Meriläinen-Porras, S. (2013) ‘The role of information technology in long-term care for older people’, pp. 252-277 in K. Leichsenring, J. Billings & H. Nies (eds.) Long-term care in Europe: improving policy and practice. Basingstoke, Palgrave Macmillan.

Boccagni P., Pasquinelli S., Kluzer, S. (2010) The Potential of ICT in supporting Immigrant Care Workers in Domiciliary Care in Italy, European Commission. Available online: http://ipts.jrc.ec.europa.eu/publications/pub.cfm?id=3519.

Crepaldi, C., De Rosa, E., Pesce, F. (2012) Literature review on innovation in social services in Europe (sectors of Health, Education and Work Package 1: literature Welfare Services). Available online at: , [Accessed August 2014].

European Commission (2010) Europe 2020: A strategy for smart, sustainable and inclusive growth. Available online at: http://eur-lex.europa.eu/.

European Commission (2011) Empowering people, driving change: Social innovation in the European Union. Report commissioned by the European Commission, Luxembourg.

European Commission (2012) The 2012 Ageing Report – Economic and Budgetary protection for the 27 EU Member States (2010-2060), European Economy, Brussels, European Union (Directorate- General for Economic and Financial Affairs of the European Commission).

Fondazione Cassa di Risparmio di Cuneo (2011) ‘L’innovazione sociale’ in Provincia di Cuneo (ed.), I quaderni, n.12. Available online at: http://www.fondazionecrc.it/index.php/centro-studi-e- comunicazione/i-quaderni1/quaderno-n12.

Goldmann, M. (2010) Professionelles Arbeiten in der Altenpflege: neue Anforderungen an einen klassischen Beruf. Vortrag anlässlich des Workshops “Assistenz im Alter – Bedarfsorientierte Technikentwicklung” am 04.11.2010 im inHaus-Zentrum in Duisburg.

Howaldt, J., Schwarz, M. (2011) ‘Soziale Innovation – Gesellschaftliche Herausforderungen und zukünftige Forschungsfelder’, pp. 217-238 in S. Jeschke, I. Isenhardt, F. Hees, S. Trantow (eds.) Enabling Innovation. Innovationsfähigkeit – deutsche und internationale Perspektiven, Heidelberg et al., Springer.

Jalonen, H., Juntunen, P. (2011) Enabling Innovation in Complex Welfare Service Systems, Journal of Service Science and Management, 4, 401-418.

Kesselring, A., Smith, S., Dobner, S. & Schrammel, M. (2014) Social innovation for active and healthy ageing: a case study collection. Brussels, King Baudouin Foundation. Available online at: http://www.kbs-frb.be/publication.aspx?id=312599&langtype=1033.

44 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Kluzer S., Redecker C., Centeno, C. (2010) “The potential of ICT in supporting domiciliary care in Spain”. JRC-IPTS European Commission. Available online at: ftp://ftp.jrc.es/pub/EURdoc/JRC61083.pdf.

Köhler, K., Goldmann, M. (2010) ‘Soziale Innovation in der Pflege – Vernetzung und Transfer im Fokus einer Zukunftsbranche’, pp. 253-269 in J. Howaldt & H. Jacobsen (eds.) Soziale Innovation: Auf dem Weg zu einem postindustriellen Innovationsparadigma. Wiesbaden, VS-Verlag.

Laloux, F. (2014) Reinventing Organizations. A guide to creating organizations inspired by the next stage of human consciousness. Brussels, Nelson Parker.

Lattanzio, F., Abbatecola, A. M., Bevilacqua, R., Chiatti, C., Corsonello, A., Rossi, L., Bustacchini, S., Bernabei, R. (2014) Advanced Technology Care Innovation for Older People in Italy: Necessity and Opportunity to Promote Health and Wellbeing, Journal of the American Medical Directors Association, 15(7), 457-466.

Leichsenring, K., Billings, J. & Nies, H. (eds.) (2013) Long-term Care in Europe: Improving policy and practice. Basingstoke, Palgrave Macmillan.

Lluch, M., Abadie, F. (2013) Exploring the role of ICT in the provision of integrated care: evidence from eight countries, Health Policy, 111(1), 1-13.

MacCallum, D. (2013) ‘Introduction: the institutional space for social innovation’, pp. 343-345 in F. Moulaert, D. MacCallum, A. Mehmood, A. Hamdouch (eds.) The international handbook on social innovation: collective action, social learning and transdisciplinary research. Cheltenham, UK, Edward Elgar.

Maino F. (2012) Il secondo welfare: contorni teorici ed esperienze esemplificative, La Rivista delle Politiche Sociali, 4, 167-182.

Martinelli, F. (2013) ‘Learning from case studies of social innovation in the field of social services: creatively balancing top-down universalism with bottom-up democracy’, pp. 346-360 in F. Moulaert, D., MacCallum, A. Mehmood, A. Hamdouch (eds.) The international handbook on social innovation: collective action, social learning and transdisciplinary research. Cheltenham, UK, Edward Elgar.

Miranda de Larra, R. (2007) ‘Discapacidad y eAccesibilidad’ in: Fundation Orange (ed.) Cuaderno 7, April 2007. Available online at: http://fundacionorange.es/

Moulaert, F., MacCallum, D., Hillier, J. (2013) ‘Social innovation: intuition, precept, concept, theory and practice’, pp. 13-24 in: F. Moulaert, D. MacCallum, A. Mehmood, A. Hamdouch (eds.) The international handbook on social innovation: collective action, social learning and transdisciplinary research. Cheltenham, UK, Edward Elgar.

Murray, R., Caulier-Grice, J., Mulgan, G. (2010) The Open Book of Social Innovation. Social Innovation Series: Ways to Design, Develop and Grow Social Innovation. London, The Young Foundation and NESTA. Available at: http://youngfoundation.org/wp- content/uploads/2012/10/The-Open-Book-of-Social-Innovationg.pdf.

45 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Nandram, S., Koster, N. (2014) Organizational innovation and integrated care: lessons from Buurtzorg, Journal of Integrated Care, 22(4): 174 – 184.

Nock, L., Krlev, G., Mildenberger, G. (2013) Soziale Innovationen in den Spitzenverbänden der Freien Wohlfahrtspflege – Strukturen, Prozesse und Zukunftsperspektiven. Available online at: www.bagfw.de/veröffentlichungen (Abruf am 23.09.2014).

NORDEN Nordic Innovation Centre (ed.) (2011) Measuring Public Innovation in the Nordic Countries (MEPIN). Aarhus, The Danish Centre for Studies in Research and Research Policy. Available from: http://nordicinnovation.org/Publications/measuring-public-innovation-in-the-nordic-countries- mepin/.

Olsson, S. (2014) Turning Demographic Ageing in Europe into Opportunities. Health Access Sweden.

Redecker C., Reig J., Carrión T., Martinez S., Armayones M., McCarthy D. & Fernandez, M. (2010) The Potential of ICT in Supporting Domiciliary Care in Spain. European Commission, available online at: http://ipts.jrc.ec.europa.eu/publications/pub.cfm?id=3760.

Repkova, K., Stiehr, K., Weigl, B. (2013) ‘Volunteering in long-term care for older people: the potential for social innovation’, pp. 232-251 in K. Leichsenring, J. Billings, & H. Nies (eds.) Long-term care in Europe: improving policy and practice. Basingstoke, Palgrave Macmillan.

Rossi Mori A., Dandi R. (2011) ‘Disabilità, non autosufficienza e tecnologie’, pp. 169-179 in Ministero del Lavoro e delle Politiche Sociali (ed.) Secondo rapporto sulla non autosufficienza in Italia. Assistenza territoriale e cure domiciliari. Roma, Ministero del Lavoro e delle Politiche Sociali.

Schulmann, K., Leichsenring, K. et al. (2014) Social support and long-term care in EU care regimes. Framework conditions and initiatives of social innovation in an active ageing perspective. Vienna et al., European Centre for Social Welfare Policy and Research et al. (MOPACT Report, #8.1).

The Young Foundation (2012) Social Innovation Overview: A deliverable of the project: “The theoretical, empirical and policy foundations for building social innovation in Europe” (TEPSIE), European Commission – 7th Framework Programme, Brussels, European Commission, DG Research.

Tinker A., Kellaher L., Ginn J., Ribe E. (2013) Assisted Living Platform – The Long Term Care Revolution. London, King’s College (Report of the Housing Learning & Improvement Network).

Vameșu, A., Barna, C. (2013) Social Innovation in Romania – Romania Country Report. Available online at: https://webgate.ec.europa.eu/socialinnovationeurope/sites/default/files/sites/default/ files/romania%20country%20report%20for%20social%20innovation%20europe.pdf [Accessed October 2014].

46 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

6 Annex I: Focus group participants and expert interviewees by country

6.1 Austria Focus Group I – Seeboden, Carinthia, AT February 5, 2015

Alice Ebenberger Director Dorfservice Drauhofen1, A-9813 Möllbrücke Web: http://www.dorfservice.at/ Gerhard Spreitzer Care Home Manager Haus Gmünd Riesertratte 45, A-9853 Gmünd/Kärnten Web: http://www.shv-spittal.at/wohnen/haus-gmuend.html Elisabeth Tropper-Kranz Director Vitamin R – Centre for Family, Social Affairs and Health Neue Heimat 24 A-9545 Radenthein Web: http://vitamin-r.at Ursula Blunder Director FamiliJa - Familienforum Mölltal A-9821 Obervellach 32 Web: http://www.familija.at/ Christine Sitter Regional Manager Regionalverband Spittal-Millstättersee-Lieser-Malta-Nockberge Leader- und Regionalmanagerin Millstätter Straße 35, A-9545 Radenthein Web: http://www.ktn.gv.at/ Kai Brauer Professor of Social Work (excused due to Fachhochschule Kärnten sickness)

Focus Group II – Vienna, AT March 25, 2015

Barbara Prazak-Aram Scientist Austrian Institute of Technology, Department of Innovation Systems TECHbase Vienna, Giefinggasse 2, A-1210 Vienna Web: www.ait.ac.at/departments/innovation-systems/ Daniela Weinholz Founder, Director Qualitätszeit (Quality Time) Lindengasse 56, A-1070 Vienna Web: www.qualitaetszeit.at/ Helmut Spreitzer Journalist; Founder of AAL-based website E-mail: [email protected] Kathrina Dankl Founder; Lecturer Studio Dankl; University of Applied Arts, Vienna, AT; Design School, Kolding, DK Lindengasse 56, A-1070 Vienna Web: www.studiodankl.com/index.php/en/ Petra Fischbacher Manager for the region of Lower Austria, East Caritas Vienna, Care Department Albrechtskreithgasse 19-21, 1160 Vienna Web: www.caritas-wien.at/?L=0

47 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Teresa Millner- Head of Department Kurzbauer Volkshilfe Austria, Care Department Auerspergstraße 4, A-1010 Vienna Web: www.volkshilfe.at/pflege Timea Kocakova Project Manager Fonds Soziales Wien (Vienna Social Fund) Guglgasse 7-9, A-1030 Vienna Web: http://pflege.fsw.at/ Claudia Campo Trainer, GerAnimation (excused due to Web: www.geranimation.at/ sickness) Heimo Österreicher Business Manager (excused due to Austrian Institute for Technology, Department of Health & Environment sickness) Viktor-Kaplan-Strasse 2/1, 2700 Wiener Neustadt Web: www.ait.ac.at

6.2 Germany Focus Group I – Dortmund, DE February 17, 2015

Arndt Winterer Director Landeszentrum für Gesundheit Gesundheitscampus 9, D-44801 Bochum Web: https://www.lzg.nrw.de/index.html Reinhard Pohlmann Director Sozialamt, Fachdienst für Senioren Kleppingstraße 26, D-44122 Dortmund Web: www.dortmund.de Heidi Bischoff Deutsche Rentenversicherung Knappschaft, Bahn und See, Dez. VIII.2 Wasserstraße 217, D-44799 Bochum Web: www.kbs.de René Thiemann Director Hüttenhospital gemeinnützige GmbH Am Marksbach 28, D-44269 Dortmund Web: www.huettenhospital.de Ulf Raith Nursing Director Hüttenhospital gemeinnützige GmbH Am Marksbach 28, D-44269 Dortmund Web: www.huettenhospital.de Joachim Wilbers Director (excused due to ProjektCare GmbH sickness) Untermainkai 20, D-60329 Frankfurt Web: www.projectcare.de Monika Goldmann Research associate Sozialforschungsstelle Dortmund Zentrale Wissenschaftliche Einrichtung der TU Evinger Platz 17, D-44339 Dortmund Web: www.sfs-dortmund.de Cordula von Koenen Seniorenbüro Eving (excused due to Evinger Platz 2-4, D-44339 Dortmund sickness) Web: www.senioren.dortmund.de

48 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Reinhard Busch Director Pflegedienst Busch GmbH Käthe Kollwitz Ring 30a, D-59423 Unna Web: www.pflegedienst-busch.com/ Jutta Meder Alzheimer Gesellschaft Bochum e.V. Universitätsstraße 77, D-44789 Bochum Web: http://alzheimer-bochum.de/# Ludger Springob Head physician Klinik für Geriatrie und Geriatrische Frührehabilitation Klinikum Vest GmbH Behandlungszentrum Paracelsus-Klinik Marl Lipper Weg 11, D-45770 Marl Web: www.klinikum-vest.de

Focus Group II – Rural district of Leer, DE March 12, 2015

Hilke Berkels Demographic representative Landkreis Leer Amt für Wirtschaftsförderung Friesenstraße 26, D-26789 Leer Web: https://www.demografie-leer.de Heike Diekhoff Seniors representative Sozialamt Landkreis Leer Bavinkstraße 23, D- 26789 Leer Web: http://www.landkreis-leer.de/Leben- Lernen/Senioren/Seniorenbeauftragte Bernd Emken Director Hospizhuus Leer Mörkenstraße 14, D-26789 Leer Web: http://www.hospiz-ostfriesland.de/index.html Ute Gramberg Team leader Altenpflegeschule - Berufsbildende Schule I Blinke 39, D-26789 Leer Waltraud Hartmann Gesprächskreis für Angehörige von Schlaganfallbetroffenen (excused) Uhlandstraße 6, D-26789 Leer Alma Janßen Director/nursing manager Diakoniestation Hesel-Jümme-Uplengen Lindenallee 2, D-26670 Uplengen Web: https://diakonie-hju.wir-e.de/aktuelles Reinhard Janssen Director W&P Seniorenheim Detern GmbH Gasteweg 14 , D-26847 Detern

Web: http://www.seniorenzentrum-detern.de/Einrichtungen/Detern/ Susanne Kreienbrock Coordinator Health region district leer Jahnstraße 4, D-26789 Leer Web: http://www.landkreis-leer.de/Leben-Lernen/Gesundheit- Verbraucher/Gesundheitsregion Christina Neusinger Nursing Manager Paritätischer Kreisverband Leer Von-Jhering-Str.8, D-26789 Leer Web: http://www.paritaetischer.de/kreisgruppen/leer/

49 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Kathrin Pahl (excused) Director Altenpflegeheim „Haus am Schwalbenweg” Schwalbenweg 25, D-26810 Westoverledingen Web: http://www.erika-pahl.de/ Silke Pahl (excused) Director Altenpflegeheim „Haus am Schwalbenweg” Schwalbenweg 25, D-26810 Westoverledingen Web: http://www.erika-pahl.de/ Claudia Saathoff Nursing manager Klinikum Leer gGmbH Augustenstraße 35-37, D-26789 Leer Web: http://www.kkhleer.de/klinikum-leer/ Frank Schüür Division Manager Long-Term Care AOK Ostfriesland-Jade Brunnenstraße 10, D-26789 Leer Web: http://www.aok.de/bundesweit/index.php

Focus Group III – Norderstedt, DE April 10, 2015

Norbert Adermann Pflegereferent Versorgungsmanagement IKK Nord Lachswehrallee 1, D-23558 Lübeck Web: https://www.ikk-nord.de/ Anne Brandt Deputy head Kompetenzzentrum Demenz Schleswig-Holstein Alter Kirchenweg 33-41, D-22844 Norderstedt Web: http://www.demenz-sh.de/ Anke Buhl Referentin für Alten- & Pflegepolitik AWO Landesverband Schleswig-Holstein e.V Siebliusweg 4, D-24109 Kiel Web: http://awo-sh.de/de/pflege/awo-pflege.html Daniela Friedrich Director (excused) Norddeutsches Zentrum zur Weiterentwicklung der Pflege Adolf-Westphal-Str. 4, D-24143 Kiel Web: https://www.pflege-ndz.de/index.php/start.html Ines Hundsdörfer Kompetenzzentrum Demenz Schleswig-Holstein Alter Kirchenweg 33-41, D-22844 Norderstedt Web: http://www.demenz-sh.de/ Anna Meiners Referentin für Altenhilfe, Pflege und verbandliche Rechtsberatung Der Paritätische Schleswig-Holstein Zum Brook 4, D-24143 Kiel Web: http://www.paritaet-sh.de/ Ulrich Mildenberger Director (excused) Pflegestützpunkt im Kreis Segeberg Heidbergstraße 28 , D-22846 Norderstedt Web: http://www.pflegestuetzpunkt-se.de/ Grit Petzold Director Alten- und Pflegeheim Haus Dänischer Wohld Gildeweg 22, D-24251 Osdorf Web: http://www.hausdaenischerwohld.de/ Swen Staack Director Kompetenzzentrum Demenz Schleswig-Holstein Alter Kirchenweg 33-41, D- 22844 Norderstedt Web: http://www.demenz-sh.de/

50 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Rüdiger Waßmuth Referent Wohn- Pflege- und Betreuungsformen Paritätische Pflege Schleswig Holstein gGmbH Zum Brook 4, D-24143 Kiel Web: http://www.pflege-sh.com/ Peter Wulff Norddeutsches Zentrum zur Weiterentwicklung der Pflege Adolf-Westphal-Str. 4, D-24143 Kiel Web: https://www.pflege-ndz.de/index.php/start.html

Expert interviews

Jürgen Gohde Executive chairman of the Kuratorium Deutsche Altershilfe (KDA) Thomas Klie Professor of Public Law and Administration, Gerontology at the Protestant Polytechnic Freiburg Angelika Noll Director of the nursing care base Mönchengladbach Nicole Ruppert Research associate in the TAPA-K project

Oliver Klingelberg Director of the staff unit “social management” of the BGW (Bielefelder Gemeinnützige Wohnungsgesellschaft mbH) and contact person for the “Bielefelder Modell”

6.3 Estonia Focus Group I—Tallinn, EE February 5, 2015

Erika Kruup Board member SA Alutaguse Welfare Centre Kooli 25, Mäetaguse alevik, Ida-Virumaa, 41301 Web: http://www.hoolekeskus.ee/avaleht/ Ivar Paimre Board member NGO Estonian family care Kuusalu pk 7, Kuusalu küla, Kuusalu vald, Harjumaa, 74601 Web: http://www.omastehooldus.eu/ Maarja Seppel Chief Specialist Tallinn City Government Vabaduse väljak 7, 15199, Tallinn Web: www.tallinn.ee Monika Haukanõmm Chairman of the board Estonian Chamber of Disabled People Toompuiestee 10, Tallinn, 10137 Web: http://www.epikoda.ee/ Tiina Kangro Journalist (also a political activist) Estonian Public Broadcasting Gonsiori 27, Tallinn, 15029 Web: http://www.err.ee/

Focus Group II—Tallinn, EE April 15, 2015

Jüri Lehtmets Team Member Helpific (social innovation start-up) and member of the board at The Estonian Union of People with Mobility Impairment Web: http://www.helpific.com

51 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Marek Jaakson CEO NGO Estonian Rheumatism Association Toompuiestee 10, 10137 Tallinn Web: http://www.reumaliit.ee/ Tarmo Pihl CEO Sentab Mäealuse 2/1, 12618 Tallinn Web: www.sentab.com Kerti Alev CEO Medikeep Suur-Patarei tn 21b-3, 10415 Tallinn Web: http://www.medikeep.eu/ Aina Saarma Head Nurse at OÜ Medendi Kaluri tee 5A, Haabneeme alevik, Viimsi vald. 74001 Web: http://www.medendi.ee Jane Muts Garage 48, HUB manager Rävala pst 7, Tallinn Web: http://garage48.org/ Paavo Ala Meditech Estonia Koidu 114, 10139 Tallinn Web: http://www.medi.ee

Expert interviews

Aina Saarna Head Nurse OÜ Medendi Kaluri tee 5A, Haabneeme alevik, Viimsi vald, 74001 Web: http://www.medendi.ee Zslot Bugarski Lecturer, Tallinn University Tallinna Ülikool, Narva mnt 25, 10120 Tallinn Triin Arva Saaremaa Business Developing Foundation Lossi 1, Kuressaare linn, Saare maakond, 93816 Web: http://www.sasak.ee/index.php?menuID=17

6.4 Hungary Focus Group I – Nyíregyháza, HU

Katalin Bécsi Hungarian Calvinist Church, Kálvineum Charity Service Manager Ildikó Csatlós NYMJV Office of the Mayor, Social and Public Education Dept. Head of Social Policy Unit Enikő Pásztor Hornyákné Joób Olivér Charity Institution – Lutheran Church Community Manager Anna Márta Humaniter Home Help Service (for-profit) Director Gábor Bence Orosi HUMANNET Foundation Scattered Farms Caretaker Service Director Szilvi Preczner Románné Nyíregyháza Social Care Centre Home Help with Alarm System Rita Zsuzsanna Szabó Nyíregyháza Social Care Centre Director Marika Vass Józsefné Nyírség Multifunctional Institution Maintenance Group, Social Service Centre Sényő Manager

52 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Focus Group II – Budapest, HU

Ágnes Ökrös Public Social Services Budapest, 11th district Erzsébet Szokoli Basic Health and Social Services Centre Budapest, 12th district Csilla Rubovszky Jeneiné Local Government Budapest, 5th district István Müller Social Service Institution Budapest, 3rd district, Kiskorona u. 3. Gabriella Józsa Halászné Hungarian Maltese Charity Service Basic Social Service Institution Márta Magassy Social Services Budapest, 11th district Szepesfalvyné Éva Gacsal Verebélyné Integrated Human Services Centre Budapest Andrea Makai Mayor’s Office, Social Services Department Budapest, 3rd district

Expert interviews

Zoltán Tarnai Director Hungarian Maltese Charity Service Methodological Centre Budapest László Patyán Lecturer Department of Gerontology, Nyíregyháza of the Welfare and Social Sciences Institute of the Health Faculty, University of Debrecen

6.5 Italy Focus Group I – Milan, IT March 26, 2015

Alessandro Baldo Soleterre – Strategie di Pace onlus Programme Officer website: soleterre.org Francesco Belletti Associations of Families Forum President Lungotevere dei Vallati 10, 00186 Rome website: www.forumfamiglie.org Ermes Cavicchini CDRL - Lombardy Research Centre on Labour Market Director Via Quadronno 33, 20100 Milano Antonio Guaita Golgi Cenci Foundation, specialised in gerontology research and care Corso S. Martino 10, Abbiategrasso (MI) website: www.golgicenci.it Emilio Didone CISL – Union, Pensioners’ Sector Via Tadino 23, 20124 Milano Website: www.cislmilano.it Giuseppe Ippolito UIL Union - Retired sector Via Mauro Macchi 41, 20124 Milano Marco Noli “Don Cuni” Consortium Health and Social Services of Magenta and Catholic University of Milan Via Dante Alighieri 2 , 20013 Magenta (MI) Rita Origo Lombardy AIMA NG0 (Alzheimer Disease Italian association) via Francesco Soave 24, 20135 Milano website: www.aimamilano.org

53 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Bruno Pietroni CGIL Union, Pensioners’ sector Via Palmanova 22 - 20132 Milano Graziana Ponte Lombardy Region, Family and social support Direction Piazza Città di Lombardia 1, 20124 Milano Giovanni Pozzi La vita Coop Via Lepetit 18, 20124 Milano website: www.lavitaonlus.com Graziella Saracco Municipality of Milan, Welfare department Via Guglielmo Marconi 2, 20123 Milano (MI)

Focus Group II – Ancona, IT January 22, 2015

Emilio Celani Union- CGIL, Pensioners’ Sector Via I Maggio 142/a, Ancona website: www.marche.cgil.it/spi/index.htm Franco de Felice President ASSCOOP Viale della Vittoria 4, 60121 Ancona website: www.asscop.it Paola Fabbri National counsellor of Federsolidarietà Confcooperative Via Ghino Valenti 1, 60131 Ancona also President of Progetto Solidarietà, NGO in Senigallia Claudio Loccioni Loccioni Humancare, Director Via Fiume 16, 60030 Angeli di Rosora, Ancona website: www.loccioni.com Anna Maria Manca Municipality of Ancona Older people, social and health services Dep. Viale della Vittoria 39, 60100 Ancona Alessandro Mancinelli Cisl - Union Via dell'Industria, 17, 60127 Ancona website: www.cislmarche.it Filippo Masera Region of Marche ARS Marche - Regional Health Agency Via Gentile da Fabriano 3, 60125 Ancona Website: www.new.ars.marche.it Andrea Marini Uil Union, Pensioners’ section Via XXV Aprile, 37/a, 60125 Ancona Website: www.uilpensionati.it Fabio Ragaini Solidarity Gruoup “Gruppo Solidarietà” Via Fornace 23, 60030 Moie di Maiolati Sp. (AN) website: www.grusol.it Lorena Rossi I.N.R.C.A. - Bioinformatics, bioengineering and Home Automation Lab Website projects: Active Ageing@Home: http://activeageingathome.eresult.it/ ChefMyself: http://www.chefmyself.eu/it/ Wiisel: http://www.wiisel.eu/ Nadia Stopponi Cisl - care workers office Via dell’Industria 17, 60127 Ancona website: http://cislmarche.it/

54 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Expert interviews

Licia Bocaletti Eurocarers and Anziani e non solo Cooperative EU project manager Via Lenin 55, 41012 Carpi (MO) Website: www.eurocarers.org Anna Maria Candela Puglia Region Welfare Dep. - Social Policy Observatory Tiziana Tesauro CNR- National Research Centre - Welfare Dep. Via Vittorio Emanuele 9/11, Salerno Antonello Scialdone ISFOL - National Institute of Research and Support Labour Market Innovation Department Corso d’Italia 33, 00198 Roma website: www.isfol.it Carlos Chiatti I.N.R.C.A. Scientific Director; Responsible Up-tech project Via S. Margherita 5, 60124 Ancona Website: www.inrca.it Project website: www.up-tech.regione.marche.it Arianna Pilocane Piedmont Region – Labour Market Dep., Equality and Migration Via Magenta 12, Torino Gabriele Arena Finesterre coop Project Manager Via Don Vittorio Volpi, 421047 Saronno (VA)

6.6 Portugal Focus Group I – Lisbon, PT

Célia Tereso Director of the Department for Social Development Municipality of Lisbon Coordinator of the Tele-assistance service “S.Ó.S.” Lara André Social care professional of Santa Casa da Misericórdia (private organisation with public intervention) in the Department for Monitoring and Management Support (Gabinete de Monitorização e Apoio à Gestão) Member of the team for the requalification programme of nursing homes Nuno Félix Member of the executive board of the community project Social Network and coordinator of the “Platform for Ageing” Pedro Lisbon Social care professional of Santa Casa da Misericórdia (private organisation with public intervention) Member of the Project SIforAGE Maria José Domingos Regional Manager of the European Anti-Poverty Network (EAPN) - Portugal (Nucleus Lisbon) Member of the EAPN Work-package “Ageing” Claúdia Andrade Researcher in Psychology Institute of Ageing (Instituto do Envelhecimento)

Focus Group II – Lisbon, PT

Jorge Monteiro Director of Comfort keepers – Lisboa Private homecare service Andreia Fernando Gerontologist Comfort keepers – Lisboa Private homecare service

55 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Maria de Fátima Coordinator of the Coordinating team of long-term care – Loures/Odivelas Salgueiro (excused) (Equipa coordenadora local de cuidados continuados da área de Loures/Odivelas) Adelaide Pereira Nurse and coordinator Home service of integrated long-term care (ECCI CONSIGO) Public long-term care network (Oeiras/Alcantara) Lúcia Cardoso Nurse and coordinator Home service of integrated long-term care (ECCI Benfica) Public long-term care network (Benfica/Carnide)

Expert interviews

José de São José Researcher/Assistant Professor of Sociology Research Centre for Spatial Organisational Dynamics (CIEO) Faculty of Economy of the University of Algarve (FUEALG) Constança Paúl Professor of Biomedical Sciences Institute of Biomedical Sciences Abel Salazar of the University of Oporto (ICBAS-UP)

6.7 Romania Focus Group I – Bucharest, RO January 31, 2015

Viorel Copil Vice-president of National Federation of Pensioners in Romania (Federația Națională a Pensionarilor din România) 36 Eugen Lovinescu Street, District 1, Bucharest Web: http://www.fnpr.org.ro Emil Bîrsan Executive Director of ADAM Association (mutual aid association) 17 Blvd. Mărăști, District 1, Bucharest Web: http://www.adambu.ro Măriuca Ivan General Director of White-Yellow Cross Foundation in Romania (Fundația Crucea Alb-Galbenă din România) 21 Blvd. Regina Maria, District 4, Bucharest Web: http://www.cag.ro Marius Augustin Pop General Director of National Council for the Elderly (Consiliul Național al Persoanelor Vârstnice) 9 George Vraca Street, et. 1, District 1, Bucharest Web: http://www.cnpv.ro Cristina Loghin President of Progenies Association 110 Blvd. Basarabia, L8/14, Bucharest Web: http://www.progenies.org Gabriel Ioan Prada Medical Director of Ana Aslan Institute of Geriatrics 9 Căldărușani Street, District 1, Bucharest Web: http://www.ana-aslan.ro Aurel Gangu Project Manager of National Federation Omenia (Federația Națională Omenia), Programme Director of CARP Association 53 Amurgului Street, District 5, Bucharest Web: http://www.fn-omenia.ro Nicoleta Diaconescu Coordinator of Medical Services, General Direction of Social Assistance and Child Protection (Direcția Generală de Asistență și Protecția Copilului) 12-14 Blvd. 1 Decembrie 1918, District 3, Bucharest Web: http://www.

56 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Mihai Zamfir Vicepresident of Romanian Association of Young Geriatricians (Asociația Tinerilor Medici Geriatri) 1 Aleea Secuilor Street, Bl.24/Sc.4/Et.1/Ap.68, District 4, Bucharest Web: http://www.tinerigeriatri.ro Ionela Suditeanu Civil servant, General Direction of Social Assistance Address: 56-58 Foişorului Street, District 3, Bucharest Web: http://www.dgas.ro/ Liliana Ana Meran Civil servant, General Direction of Social Assistance Address: 17 Blvd. Mareșal Averescu, District 1, Bucharest Web: http://www.dgaspc-sectorul1.ro/pagina.aspx

Focus Group II – Ilfov County, RO March 31, 2015

Mihai Dumitrache President, Council for the Elderly Ilfov County (Consiliul Național al Persoanelor Vârstnice) 9 George Vraca Street, et. 1, District 1, Bucharest, Romania Victorița Dumitrache Social assistant, Mogosoaia Local Council 138 Bucureşti-Târgovişte Avenue, Mogoșoaia, Ilfov County Web: http://primaria.mogosoaia.ro/ Cristina Dascălu Social assistant, Primăria Brănești 69 Blvd I. C. Brătianu, Brănești, Ilfov County Web: http://www.primaria-branesti.ro/ Mihaela Dogaru Social assistant, Primăria Cernica 10 Traian Street, Cernica, Ilfov County Web:http://cernica.judetulilfov.eu Mirela Peteanu Social Assistant, Primăria Ciolpani 132 Mănăstirea Țigănești Street, Ilfov County Web: http://www.primariaciolpani.ro/ Narcisa Mititelu Social Assistant, Primăria Copăceni, 190 Șoseaua Principală, Ilfov County Web: http://www.primariacopaceniilfov.ro/

Expert interviews

Siana Metodieva Team member Home Care and Assistive Services for an Independent and Dignified Life Project – Bulgarian Red Cross Gloria Ortiz Project Manager Carer+ Project Elena Vâneaţă President of the Association for the Protection of Retired Persons’ Rights (APRPR) Ancuţa Vameşu Coordinator of the Institute of Social Economy, member of the GECES, European Commission Group of Experts on Social Entrepreneurship Cristina Barna Expert at Institute of Social Economy and member of the GECES, European Commission Group of Experts on Social Entrepreneurship

57 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

7 Annex II: MoPAct Focus Groups ‘Social Innovation and Long-term Care’ – Design

When: January to April 2015

Where: Appropriate workshop setting (to be chosen by individual partners, preferably one rural, one urban context)

Moderators: Preferably two moderators so that one can be the moderator (M1) and the other observer/note-taker (M2)

Organiser: MOPACT-WP8 partners in all countries in collaboration with selected organisations/initiatives

Participants (following the German model of ‘Care Conferences’): about 8-10 representatives of

• long-term care facilities (care home managers) and services (management) • local/regional administration, • relevant NGOs, (local) associations, Social Innovation initiatives • senior organisations and/or user initiatives

Objectives:

• To identify necessary innovations in long-term care in the national/regional context (barriers/drivers) • To develop recommendations/measures/first steps to realise most important innovations • To integrate the results into those of the European MOPACT-study on “Social Innovation in Long-term Care and Active Ageing”

Material:

• PC + projector (if no projector available you may print hand-outs to present MOPACT results) • 1-2 flipcharts (if not available you may use a number of large kraft paper sheets to be attached on the wall) • 10 markers / different colours • sticky notes/post-it (if possible in format 12x8) and 50 ‘voting points’ • A coffee break will be included, and lunch will be provided for participants after the end of the session

58 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

59 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

60 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

61 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

8 Annex III: Priority areas for social innovation in LTC and social support, by country

Country Focus group/Expert Priority areas for SI interview

AT FG I: Rural (Carinthia) 1) Case management 2) Empowerment of care recipients & family members

FG II: Urban (Vienna) 1) Ageing differently 2) New care services

DE FGI: Dortmund 1) Improve interface management 2) Caring communities/locally-based care FG II: Rural district of Leer 1) Mobility and housing 2) Expansion of existing LTC services FG III: Norderstedt 1) Pillarisation 2) Professional education & training Expert interviews 1) Caring communities/locally-based care 2) Fostering social participation and agency/autonomy of older adults 3) Lifecourse approach in employment policies at the macro- and meso-level 4) Culturally sensitive care/ needs-tailored care 5) Cross-departmental planning 6) District-specific planning 7) Linking local and EU-level services 8) Affordable and barrier-free housing 9) Reconciliation of work and informal care 10) Networking between professional groups 11) Professional education & training 12) Improve services for the people with dementia & the very old 13) More holistic approach to assessing care need 14) Reduction of hierarchies between the various care professions 15) More equitable distribution of caring responsibility between genders EE FG I: Traditional public sector 1) Integration and work and NGO service providers 2) Availability of services FG II: Innovative service 1) Innovative solutions providers (start-ups) 2) Empowering older persons Expert interviews 1) High burden of care 2) Accessibility of services

62 MOPACT WP8_QUALIND Report Key drivers of social innovation in social support and long-term care

Country Focus group/Expert Priority areas for SI interview HU FG I: Rural (Nyíregyháza) 1) Professionalisation of home care services 2) Sector-neutral financing FG II: Urban (Budapest) 1) Financing that is appropriate to care need and actual services rendered 2) Expansion of services to address issues of accessibility 3) Information exchange, communication, and collaboration between stakeholders (incl. users) Expert interviews 1) Provision of complex care corresponding to the needs 2) Inclusion of ICT devices and environmental conditions in a system of complex eldercare 3) Support for informal carers 4) Access to new funding for home care services 5) Improvements in quality of services/quality evaluation IT FG I: Ancona 1) Educating about dependency 2) Genuine admittance and referral services FG II: Milan 1) Case management 2) Proactive prevention Expert interviews 1) Integrated services to support family care and family carers 2) Establishment of an innovation institute PT FG I: Platform for Ageing 1) Implementing a user-centred approach (Plataforma para a Area do 2) Development of integrated governance Envelhecimento) FG II: Public & private 1) Sustainability (social, economic, financial, political) providers of home care 2) Investment in carers’ education and training services in Lisboa municipality Expert interviews 1) Implementing a user-centred approach 2) Cultural representations of ageing 3) Facing illiteracy in old age RO FG I: Urban area 1) Design of the national LTC system 2) Financing mechanism for LTC providers FG II: Rural area 1) Development of LTC services for low-income older adults 2) Case management Expert interviews 1) Delivery process of LTC services 2) Human resources in LTC (formal & informal) 3) Financing mechanisms/Affordability Sources: Expert interviews and focus groups conducted in each partner country in Winter/Spring, 2015.

63