1_9788490042403 by Editorial Tirant Lo Blanch

READINGS OF THE SOCIAL SUSTAINABILITY THEORY Applications to the long-term care field

Coordinators

JORGE GARCÉS STEPHANIE CARRETERO FRANCISCO RÓDENAS

Valencia, 2011

Copyright ® 2011 Todos los derechos reservados. Ni la totalidad ni parte de este libro puede reproducirse o transmitirse por ningún procedimiento electrónico o mecánico, incluyendo fotocopia, grabación magnética, o cualquier almacenamiento de información y sistema de recuperación sin permiso escrito de los autores y del editor. En caso de erratas y actualizaciones, la Editorial Tirant lo Blanch publicará la pertinente corrección en la página web www.tirant.com (http://www.tirant.com).

Directores de la Colección:

Jorge Garcés Ferrer Catedrático de Universidad University of Valencia Polibienestar Research Institute Mª Carmen Alemán Bracho Catedrática de Trabajo Social y Servicios Sociales UNED

© tirant lo blanch edita: tirant lo blanch C/ Artes Gráficas, 14 - 46010 - Valencia telfs.: 96/361 00 48 - 50 fax: 96/369 41 51 Email:tlb@tirant.com http://www.tirant.com Librería virtual: http://www.tirant.es i.s.b.n.: 978-84-9004-241-0 MAQUETA: pmc Media Si tiene alguna queja o sugerencia envíenos un mail a: atencioncliente@tirant.com. En caso de no ser atendida su sugerencia por favor lea en www.tirant.net/index.php/empresa/ politicas-de-empresa nuestro Procedimiento de quejas.

COORDINATORS Prof. Jorge Garc茅s, PhD Polibienestar Research Institute, University of Valencia, Spain

Stephanie Carretero, PhD Polibienestar Research Institute, University of Valencia, Spain

Francisco R贸denas, PhD Polibienestar Research Institute, University of Valencia, Spain

Acknowledgements The studies presented in this book received financing from the Ministry of Science and Innovation, through the Spanish National R+D+I Plan (2008â€“2011) (Project reference: CSO2009-12086; CSO2010-15425 and JCI-2008-02145); from the Generalitat Valenciana, project Prometeo-OpDepTec (Project reference: PROMETEO/2010/065); Valencian Health Agency, Ministry of Health of Valencia 2010, 2011; Interlinks project (FP7-HEALTH-2007-B - Project number 223037); Smart technologies for self-service to seniors in social housing (HOST) (project reference: ISCIII2010-PI02987).

INDEX The social sustainability theory: An introduction.................................. Jorge Garcés Francisco Ródenas Towards a new welfare state: the social sustainability principle and health care strategies......................................................................... Jorge Garcés Francisco Ródenas Vicente Sanjosé Care needs among the dependent population in Spain: an empirical approach............................................................................................ Jorge Garcés Francisco Ródenas Vicente Sanjosé Suitability of the health and social care resources for persons requiring long-term care in Spain: An empirical approach.............................. Jorge Garcés Francisco Ródenas Vicente Sanjosé Case management method applied to older adults in the primary care centres in Burjassot (Valencian Region, Spain)............................... Francisco Ródenas Jorge Garcés Stephanie Carretero M. J. Megia Evaluation of the home help service and its impact on the informal caregiver’s burden of dependent elders.............................................. Stephanie Carretero Jorge Garcés Francisco Ródenas Variables related to the informal caregivers’ burden of dependent senior citizens in Spain................................................................................ Jorge Garcés Stephanie Carretero Francisco Ródenas Vicente Sanjosé

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INDEX

The informal caregiver’s burden of dependent people: Theory and empirical review........................................................................................ Stephanie Carretero Jorge Garcés Francisco Roódenas Vicente Sanjosé The care of the informal caregiver’s burden by the Spanish public system of social welfare: A review.......................................................... Jorge Garcés Stephanie Carretero Francisco Ródenas Mariano Vivancos A review of programs to alleviate the burden of informal caregivers of dependent persons............................................................................. Jorge Garcés Stephanie Carretero Francisco Ródenas Carmen Alemán

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The social sustainability theory: An introduction* Jorge Garcés Francisco Ródenas

For about a decade the interdisciplinary research institute of Polibienestar at the University of Valencia has focused its investigations on the social sustainability model (Garcés, 2000), that attempts to explain the threat exposed to the social contract and the legitimization of the institutions maintained by European welfare states, if we are not able to make more efficient and effective social protection systems, and make them sustainable in time, so that they can be enjoyed by future generations. In fact European institutions provide data in favor of this affirmation (Puglia, 2009). Firstly, to understand the problem it is necessary to start from an observed contradiction, especially of European citizens formed by a large middle class that demands even more resources, services and welfare benefits that are of quality, free and protected by right, against the constant reduction of investment and institutional supply of welfare (George, Stathopoulos and Garcés, 1999). This same argument has been offered by Donati (2004), speaking about the unstoppable and progressive sequentiality of more democracy, more rights, and more social policies. Secondly, European governments true to welfare state principles that in many cases constitute true State agreements, have to redistribute resources through social policy using tax

This introduction is part of the text of Garcés J & Ródenas F: “Sustainable social and health care transitions in advanced welfare states” Chapter 6, in BROERSE J & GRIN J “Towards system innovations in health systems: Understanding historical evolution, innovative practices and opportunities for a transition in healthcare”, Part II. Innovating practices: Experiences and lessons, Routledge NY.

J. GARCÉS - F. RÓDENAS

burden measures directed towards the middle classes without receiving and perceiving reciprocity of goods and services in exchange for its “contributive conformity” on behalf of governments. There are a number of phenomena that are invariable in European society and will force an essential increase of future public investment in welfare, and that could lead to the unsustainability of European protection systems (Directorate-General for Economic and Financial Affairs 2002a,b). We are referring specifically to the irresistible increase of health costs (Dixon and Mossialos, 2002; Mossialos, Dixon, Figueras, and Kutzin, 2002); working in parallel and with a lack of coordination of the distinct systems of protection; epidemiological and demographic changes in Europe, with an increase in aging and the population in a situation of dependency (Grundy and Glaser, 2000; WHO, 2002; Jackson and Howe, 2003), as well as the continual chronic illnesses that continue to increase the cost of acute hospital attention (Singh, 2005); and changes of family structures and the culture of intergenerational solidarity, especially in Southern European countries with important axiological socio-labour changes of women. Also, as women are increasingly entering the labour market while maintaining their main role in informal care, problems emerge of overburdened caregivers (Family Caregiver Alliance, 2001; MTAS, 2005). But the problem is complex and its solution is difficult as it originates from diverse factors that combine and are going to persist over time and will affect the social cohesion of European society in the short term, as well as the unsustainability of protection systems as we presently know for future generations. When another factor is related especially to a certain posture of immobility on part of the government as well as the society in general; even if European governments (especially Southern Europe) are not adopting efficient and effective measures and in time to deal with the recommendations of European Union authorities with respect mainly to the sustainability of pension systems and the progressive increase of health costs. The answer to this problem is the restructuring of two systems of protection —social and health— with the finality of making them more efficient and effective. We suggest the application of the Social Sustainability Theory to the long-term care field. This theory consists of a joint reorganization of the social services and the health

THE SOCIAL SUSTAINABILITY THEORY: AN INTRODUCTION

system, as a holistic model providing an answer to the necessities of people requiring long-term care, to increase their welfare and quality of life, which includes dying with dignity. This new theory, as promoted by Polibienestar Research Institute (University of Valencia), would be supported by three principles: Social sustainability, Quality of life and dignified death, and Social co-responsibility. These principles include the criteria of sustainable social-health care: affordability, quality, appropriateness and accessibility. The care services as envisaged by the theory will be affordable and accessible, because its implementation depends on the responsibility of the individual in using the system combined with the universal principle of welfare-state equity (also proposed as one of the ethical principles of sustainable health care by Jameton & McGuire 2002). The application of the theory can increase the quality of services because it offers an integral knowledge of individual necessities (Batalden & Davidoff, 2007) —social, health, functional, psychological, economic and cultural— and providing an individualized method of planning and management of them. The theory is appropriate as it refers to care that is tailored to the needs and cultural preferences of the clients. To integrate and redesign the social and health protection structures, complicates the structure, but wins in effectiveness. The first principle is the social sustainability, in this principle we adopt the sustainability concept of Rosen (2009). We define this as the extension of the welfare principle of Universality (Gilbert & Terrell, 2004) in time, in such a way that welfare is a right, not only for the citizens present, but also for all those people who succeed us forming the society of the future. From the axiological point of view, the principle of social sustainability takes on the value of solidarity between generations, and is legitimised ethically through a wider and deeper re-analysis of the fundamental social values of freedom and equality: (a) freedom and responsibility, insofar as our present freedom implies the responsibility of taking into account our successors in our actions or the conditions of life we nurture; (b) equality of rights and obligations, as a consequence of our actions, no present or future citizen should have their freedom, their options or their decision taking capacity impaired. Social sustainability is related to the principle of ‘No-loser constraint with hypothetical compensation’, or to what is the same,

J. GARCÉS - F. RÓDENAS

that it is legitimate to carry out changes in social and health policy if the benefits outweigh harmful effects —cost/benefits ratio—, as long as there is an offsetting subsequent redistribution of benefits among the population —an increase in equity—, a benefit which manages to achieve that all citizens badly affected by the first phase of change, improve their situation in that none of them is in a worse situation prior to the beginning of the change. The quality of life axiom in this theory is not confined to establishing an objective and dignified standard of life, but should also be reinterpreted as a subjective citizen right. On the one hand, a person should be able to improve her subjective welfare remaining at home and with their family, as long as is possible, with a good degree of social and emotional support as well as therapies and active rehabilitation that support both the client and the main caregiver. On the other hand, there should be optimal accessibility in the sense that the client obtains the service at the time and place and in the amount they need at a reasonable cost, eliminating physical, geographic, organisational, social and cultural barriers. Putting this principle into practice implies efficacy and efficiency (Docteur, 2001), as the degree to which clients manage to improve their health and welfare while remaining in their familiar surroundings (OECD, 2005), boosting resources such as at home help, phone assistance or medicines and home hospitalization, with a good ratio between the real impact of the service and its production cost. And proximity, the new situation must be able to offer dependent persons the services they require in nearby surroundings, starting from an interdisciplinary valuation of every situation with a Plan for Personalised Care. In addition, we have included in the theory the concept of dying with dignity. With the epidemiological and demographic changes and subsequent degenerative processes, the terminal life phase tends to last longer. There is an increasing need for bioethical health protocols beyond the sphere of the hospital, as well as for legislation to safeguard individual rights related to the decision of the individual when one dies and how one dies by establishing a basis of quality and ethics for dying with dignity outside of a corporate or religious sphere. The last principle, the social co-responsibility, deals with the degree of individual or group involvement in the social and financial

THE SOCIAL SUSTAINABILITY THEORY: AN INTRODUCTION

maintenance of public protection structures. Individual responsibility for one’s welfare and tax contribution to the state is interpreted here as a supportive, active contribution to finance of public welfare through part payment of services in the protection systems used, depending on income and tax curriculum of the user and/or their relatives, so that other people who objectively cannot finance part of their needs also benefit. Taking on this principle does not mean a wager on individualism, responsibility and meritocracy leading to a Friedmanian retreat of the state. On the contrary, social co-responsibility means maintaining a state protection structure at the same time as individuals are made partly responsible for welfare. Presently the systems of protection function on the basis of principles of solidarity in relation to income level and individual wealth which means that the tax burden falls mainly on the middle class. Especially when facing an increase of poverty and in times of economic crisis, the State tends to increase the tax burden on the same social class. But the middle class is reluctant to pay taxes when they receive few services of quality from the public administration as is described the squaring of the circle of welfare1 (George & Miller, 1994). It is certain that the social co-responsibility consists in providing individual solidarity to society through the State institutions, but the state should find formulas that prevent problems of fiscal refusal and increase it co-responsibility with the middle class; one way would consist in reducing taxes to people who would have made a more efficient use of the social protection system. It deals with the considerable weighted or balanced reward to those that reduce expenditure on social protection systems with the adoption of conducts and practices of using with less frequency public services (for example, health, which is the most expensive) and by the adoption of preventive conducts and practices of health risks.

The theory of ‘squaring the circle of welfare’ put forward by George & Miller (1994), can be currently applied to countries such as Spain by analyzing the political and economic equilibrium that some states are subject to in the intent of leveling the resources with the need for: 1) satisfy the growing public demand for the provision of top-quality welfare, 2) satisfy the public demand in parallel to the limitation of the imposed levels, 3) maintain and increase the levels of economic growth, 4) maintain and improve the opportunity of choice.

J. GARCÉS - F. RÓDENAS

The application of the principles of the Social Sustainability Theory within the long-term care field is required to initiate a transition process that involves changes in the structure, culture and practice. Following the model of Loorbach & Rotmans (2009)2 in table 1 we shows a comparison between the current situation and the derived from the implementation of the new theory to long-term care. Table 1 Structural changes in the transitional process

Structure

Culture

Characteristics

Present regime

Social sustainability theory

- Physical (stocks, flows). - Economic (market, production, consumption) - Institutional (actors, individuals and organizational)

– Physical structure with an upset balance of size and without a flow of protocols. – Public productivity-private consumption. – Focus on the cost of the production of services, limited evaluation of the investment in prevention. – Core: services and programs.

– Reduction in size of both and a flow of protocols – Public and private production. Private consumption. – Evaluation of the balance between investment in prevention, health care and treatment. – Core: people that require care.

- - - -

– Universality, equality, accesibility. – Differentiated norms by the system (health/welfare). Multidisciplinary methodology multidisciplinary, without connection. – Service protocols. – Functional paradigm. – Ethical debate focused on therapies: life-saving and new technology.

– Social sustainability, quality, co-responsibility. Common norms for both systems. Interdisciplinary methodology. – Case management and intineraries of maximum efficiency. – Ecosystemic paradigm. – Ethical debate focused on humanization and bioethics.

Values Norms Methodology Paradigms

Loorbach D & Rotmans J (2009) Part II: Towards a better understanding of transitions and their governance: a systemic and reflexive approach, in Grin J, Rotmans J & Schot J Transitions to sustainable development, KSI.

THE SOCIAL SUSTAINABILITY THEORY: AN INTRODUCTION

Practice

Note:

Characteristics

Present regime

Social sustainability theory

- Productive routines - Conducts

– Management agreements differentiated by services. – Cooperation within each service. – Obligations with patients and families before concrete problems.

– Management agreements for joint intervention (home, community, institutional). – Intersystem and services cooperation of different areas and intervention levels. – Long term obligations.

Based on Van Raak’s model, 2008, cited in Loorbach D & Rotmans J (2009) Part II: Towards a better understanding of transitions and their governance: a systemic and reflexive approach, in Grin J, Rotmans J & Schot J Transitions to sustainable development, KSI.

In this book we present this Social Sustainability Theory in an experimental form. The Polibienestar researchers have put it partially into practice in the Valencian Community (Spain). The book contained 9 papers produced from 2003 to 2010, which provides the scientific foundation of the theory as well as its application to the long-term care field, mainly by measuring the suitability of resources and implementing case management in social and health care resources for dependent older people and the organization and coordination of social and health care services to reduce the burden of informal caregivers. Putting the above ideas into practice is very difficult, due to the complexity of welfare systems and the fact that none of the above axioms are capable of guaranteeing the survival of the welfare system in the long term, in so far as the increase in efficiency may be compatible with continuous increases in costs as long as the costbenefits ratio improves. Nonetheless, the rise in costs is a continual menace to the principle of Social sustainability, a principle which together with those of Social Co-responsibility and Quality of Life and Dignified Death.

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References BATALDEN, P. & DAVIDOFF, F. (2007): What is “quality improvement” and how can it transform healthcare? Qual Saf Health Care, 16: pp. 2-3. DIRECTORATE-GENERAL FOR ECONOMIC AND FINANCIAL AFFAIRS (2002a) Incorporating the sustainability of public finances into the Stability and Growth Pact. European Economy, 3: 62-74. DIRECTORATE-GENERAL FOR ECONOMIC AND FINANCIAL AFFAIRS (2002b) The long-term sustainability of public finances. European Economy 3: 32-36. DIXON, A. & MOSSIALOS, E., (editors) (2002) Health care systems in eight countries: Trends and challenges. The London School of Economics & Political Science. London. DOCTEUR, E. (2001) “Measuring the Quality of Care in Different Setting”. Health Care Finan Rev; 22 (3): 59-70. DONATI, P. (2004) “Nuevas políticas sociales y Estado social relacional”, Revista Española de Investigaciones Sociológicas, nº 108, 9-48. FAMILY CAREGIVER ALLIANCE (2001) Fact Sheet: Selected Caregiver Statistics. Family Caregiver: Alliance San Francisco, CA. GARCÉS, J. (2000) La nueva sostenibilidad social. Ariel, Barcelona. GEORGE, V., STATHOPOULOS, P. & GARCÉS, J. (1999) “Squaring the welfare circle and government ideology: Greece and Spain in the 1990’s”, Internacional Social Security Review 52 (4), 47-67. GEORGE, V. & MILLER, S. (ed.) (1994) Social policy towards 2000: Squaring the welfare circle, Routledge, London. GILBERT, N. & TERRELL, P. (2004) Dimensions of social welfare policy (6th ed). Boston, M. A.: Allyn & Bacon. GRUNDY, E., GLASER, K. (2000) “Sociodemographic differences in the onset and progression of disability in early old age: a longitudinal study”. Age Ageing 29: 149-157. JACKSON, R. & HOWE, N. (2003) The Aging Vulnerability Index. An Assessment of the Capacity of Twelve Developed Countries to Meet the Aging Challenge. Center for Strategic and International Studies and Watson Wyatt Worldwide. Washington. JAMETON, A. & MCGUIDE, C. (2002): Toward sustainable health-care services: principles, challenges, and a process, International Journal of Sustainability in Higher Education, vol. 3-2, 113-127. MOSSIALOS, E., DIXON, A., FIGUERAS, J., & KUTZIN, J. (editors) (2002) Funding Health Care: Options for Europe. Open University Press. Buckingham - Philadelphia. MTAS —Ministerio de Trabajo y Asuntos Sociales— (2005) Libro Blanco de la Dependencia. IMSERSO, Madrid

THE SOCIAL SUSTAINABILITY THEORY: AN INTRODUCTION

OECD (2005) The OECD Health Project: Long - term care for older people. OECD: Paris. PUGLIA, A. (2009) Population and social conditions, Statistics in focus 40/2009, Office for Official Publications of the European Communities, Luxembourg. ROSEN, M. A., (2009) “Editorial Sustainability: A Crucial Quest for Humanity - Welcome to a New Open Access Journal for a Growing Multidisciplinary Community”, Sustainability 2009, 1, 1-4; doi: 10.3390/ su1010001, Received: 28 January 2009 / Accepted: 3 March 2009 / Published: 3 March 2009. SINGH, D. (2005) Transforming chronic care. Evidence about improving care for people with long-term conditions. Birmingham: NHS Institute for Innovation and Improvement. WHO (2002) Current and future long-term care needs: An analysis based on the 1990 WHO study The Global Burden Disease and the International Classification of the Functioning, Disability and Health. The World Health Organization, Collection on Long Term Care: Geneva.

Towards a new welfare state: the social sustainability principle and health care strategies* Jorge Garcés Francisco Ródenas Vicente Sanjosé

Abstract In this paper we propose a social and health care model that offers alternatives to three problems arising in converging European welfare states, particularly in the southern nations: the rise in demand for services and features linked to the ageing process, the increase in dependency and the crisis of informal support. Development of the principles of social sustainability implies reformulation of the regulatory, care, economic, administrative, cultural, and axiological framework enabling a response to the needs of long term care without compromising the welfare of future generations. Together with this principle, quality of life elevated to a subjective right directs attention towards the sphere closest to citizens, eliminating all barriers, which hamper exercise of this right. All of the above produces economic and social costs which must be accepted from a viewpoint of social co-responsibility, which brings with it the supply of welfare individually, without detriment to the exercise of state responsibility in guaranteeing a social protection system of a universal nature.

Keywords gies

European welfare states, Axiological framework, Social sustainability, Health care strate-

Contents: I. European convergence: the same problem with different solutions?– II. Three threats to the mediterranean welfare system.– III. Basis for a sustainable health care system.– 1. Social sustainability.– 1.1. Legal.– 1.2. Care.– 1.3. Economic.– 1.4. Administrative.– 1.5.

This paper was published in “Health Policy 65 (2003), 201-215”.