The European model of long-term care (LTC): mixed systems of family responsibility, care and socialisation of the risk of dependency. Towards an integrated model of care centred on the person
The document synthetically analyses the transition of long-term care (LTC) or dependency care programmes and systems in the European Union's welfare regimes, i.e. how the transition from welfare programmes to systems of universal coverage of different degrees and levels of dependency has taken place.
Furthermore, it highlights the problems affecting universal coverage systems in terms of financial sustainability, the capacity of households to provide informal care, the modes of governance between the different levels of government involved in the regulation, financing and provision of the LTC, the problems of coordination between social services and the health system and, finally, the involvement of the private sector in service provision.
Finally, the social and health impact of the Covid-19, especially in the residential sector for the elderly and the disabled, has opened up a debate on what model of care needs to be developed to prevent and deal with situations of dependency. Given the complex nature of the LTC, the document points out two lines of debate and future development: on the one hand, the need to define a social care structure or care society based on the fair distribution of informal care; on the other hand, to develop models of comprehensive care, centred on the person and whose care space is the home as far as possible, that is, the right to live and be cared for at home.
1. The transition from welfare-based to universalist LTC models
If we take a look at the recent history of developed countries with Welfare States (period 1950-1980), we can see that the risk of dependency was a combination of family intervention and, secondarily, institutional intervention under a welfare logic (for people without resources). In the "fordist family" model, the housewife was responsible for the care of children and dependent persons. The State, in turn, intervened in two ways: through economic and technical benefits in the case of occupational accidents that caused major disability (as a social security benefit) and, exceptionally, by attending to those people in a situation of dependency without economic resources or family support (public system of social services and social services of the voluntary or non-profit sector).
In the social division of long-term care, the family was the main protagonist through the unpaid care time of the housewife, the State played a residual or second-order role, the market offer hardly existed and the civil society or sector of non-profit organisations (NPOs) carried out the care support function for people without resources either directly or in collaboration with the State. This social division of care can be described as family-centred or simply care-centred.
In the social division of long-term care, the family was the main protagonist..., the State played a residual or second-order role
This model, which we describe generically and without the necessary nuances as "feminized care", varied according to the different welfare regimes. This model reached its social limits around the end of the 1970s and early 1980s, with the transition beginning in the Nordic countries, where a rapid ageing of the population and a high level of female employment were beginning to coincide. Between that date and the first dependency laws, a complex process of socio-demographic transition began which changed the social basis of risk, redefined social demand and, as a consequence, the supply which responded to it.
The institutional response to risk occurs at a historical moment in which there is a profound change or crisis in the nature and modes of intervention of the Welfare State, which will contribute to the progressive redefinition of the traditional roles of the State, the market, the family and civil society under new socio-institutional clusters in which the role of the State is increased, the market supply is expanded, family care within households is restructured and organized civil society strengthens its collaborative role with the State.
At the beginning of this century, the European institutions defined the importance of guaranteeing universal systems of care for situations of dependence in relation to health care and even pension systems (Euroepan Commission, 2014 and 2016). Behind this strategy is the entire wealth of development of care systems in the Nordic world (decade of the 1980s) and the new reforms developed in countries with social security models during the 1990s (continental model comprising countries such as Germany, Austria, Belgium and France, among others).
Insofar as situations of dependency generate different forms of exclusion, needs for support resources from social protection systems and new forms of social and health intervention, the European Commission's recommendations are placed under the perspective of contemplating care for dependency within joint strategies that guarantee universal, quality and sustainable social protection systems. With regard to the LTCs, the philosophy of the EU will be based precisely on this triple objective of universal coverage, quality care and financial sustainability that has been adopted in an unequal manner by successive national dependency systems, including the Spanish one.
In long-term care, the EU's philosophy is based on a triple objective of universal coverage, quality care and financial sustainability
The change of trend has not, however, meant a radical institutional turnaround. On the contrary, the new systems are based on their traditional protective mechanisms and from these they grow and develop. In some cases they involve new forms of arrangement, reorganisation and rationalisation of the benefits already provided. Whether the system is set up within the health system or the social services system is an important differential factor which also affects the forms of connection and coordination between the two systems. Moreover, the development of care systems for dependent persons has been possible partly due to the transfer of personal care from the health system to the social services system for reasons of efficiency and effectiveness.
In this way, a new structure of care provision or of care for dependency emerges in which the family does not disappear, but rather redefines its functions, responsibilities and distribution of the time of care. In practically no EU country has the family's role in care been radically reduced. What has happened is that it develops its functions through the support of public social benefits that are accessible to all dependent persons who meet the requirements of a dependency scale. The family remains responsible and participates in the process of choosing which social benefits are most appropriate within the existing offer or opts for cash benefits as compensation for the care function or to be able to access existing public or private services. But above all, the new model tends to be based on an extension of coverage based on the subjective right to personal care. At the same time, the new models seek to establish socio-health care continuums in which care coordination is guaranteed.
On the basis of a new development of the Welfare State, systems of care for dependency guarantee forms of protection that are never unlimited. These are social benefits that tend to guarantee a part of the care to which the person concerned has to contribute with his or her resources, the so-called co-payment according to his or her income and wealth, and the family through its time and responsibility in the care function.
2. Features of the European model of care for dependency and its recent changes
Although attention to dependency in the EU is characterised by a wide national diversity (Ranci and Pavolini, 2013; Spasova et al, 2018), it is worth highlighting what would be common features of the European social model in this area which would allow us, below, to highlight recent trends of change.
Common features of national LTC systems
- Mixed systems. A first common feature of the EU's national systems of care for dependency is that they do not generally replace the family, which remains the fundamental structure dealing with personal care. One could even say that the new systems reinforce the role of the family in terms of care by guaranteeing benefits that facilitate this traditional function. This is partly because personal care remains within the intimate sphere of households and there is an unavoidable reserve of control over it. This undoubtedly means that the family as a care sphere is in a field of ambivalence: on the one hand, it does not relinquish control of care and even actively participates in it; on the other hand, it demands support to make this care function possible in a way that is compatible with the labour integration of women carers, while facilitating new forms of division of care time between men and women.
This ambivalence means that, on the one hand, public policies on dependency reinforce the traditional role of the family in terms of care (which means continuing on the path of the feminisation of care) and, at the same time, stimulate new forms of organisation of family care that favour greater gender equality. In this way, the new policies favour, paradoxically, a strengthening of the traditional care family and a relative de-familialisation.
- The transition from care to universal care. The Welfare State is actively contributing to this reconstruction of the traditional role of the family in caring for people in a situation of dependency. If until recently it did so by way of care or through the Social Security system, it now takes a further step forward by opening up a third channel, which was already open in the Nordic welfare system, in which not only the person without family resources or support or the worker who suffers a serious accident is protected, but all citizens in a situation of dependency according to a scale of assessment.
However, there have been no breaks or radical changes in this area of protection, but rather a development and improvement of policies and programmes that already existed. Where there is a certain break or fundamental progress is in the recognition of the social right to the protection of dependency and in the fact that the Public Sector regulates the whole system and finances part of the care for dependency (together with the territorial administrations and the co-payment of the beneficiaries) and defines the main lines of a decentralized system that is relatively coordinated with the health system.
A fundamental advance is the recognition of the social right to the protection of dependency and the fact that the public sector regulates the whole system, finances part of the care for dependency and defines the guidelines for a decentralised system that is relatively coordinated with the health system
The public LTC systems, in their institutional turn towards forms of universalising risk coverage, continue to be based on family responsibility and on the private, commercial and non-profit provision of socio-health services. It is important to emphasise the relative path-dependency or monitoring of the inertia of national public policies in order to understand the organisational and financial complexity of the current LTC systems. Thus, we observe how the high integration of women in the labour market in the Nordic welfare system and a widely socializing vision of long-term care soon resulted in dependency care being anchored in the social service system from which the response to risk is developed. In contrast, in the continental or Bismarkian welfare system, the centrality of the family in the care structure has meant a certain division of labour between a public sector that finances the economic benefits, which are translated into compensation for the carer or a service cheque, and the relatively active role of the caring family, whose burden falls mainly on women. The social and legal responsibility of the family in the care of dependent persons largely explains the important role that the family plays in the care system. Another very high responsibility is that of the family in the countries of the Mediterranean welfare regime, which explains why institutional designs take it into account in terms of compensating for time spent in informal care. In contrast, in the Anglo-Saxon welfare regime, family responsibility is widely shared with individual responsibility for risk and the welfare support function of the State for the poor.
Finally, in the Mediterranean welfare regime, as is the case in Spain (Marbán Gallego, 2019, Montserrat Codorniu, 2019; Rodríguez Cabrero et al 2018; Rodríguez Cabrero, 2019; Rodríguez Cabrero and Marbán Gallego, 2020) the law on personal autonomy and care for dependency (LAPAD) approved in 2006, in addition to ordering the existing benefit system, regulates and finances a complex system that combines services with benefits for family carers, in financial and operational cooperation with the Autonomous Communities. It is a mixed system that reflects the transition in Spain's social and labour structure, but where the responsibility for the burden of care continues to fall on women, whether they are housewives or employed in the labour market.
- On the other hand, the public systems of care for dependency or LTC, as we have seen, combine several institutional (social services, social security, health system) and territorial (State, regions or communities and municipalities) sub-sectors. The general trend in all European models has been towards decentralization and unequal forms of coordination between social and health systems. The forms of socio-health coordination vary between models, but the trend is towards social services and health intervening in the process of assessing dependency and the care system itself. It should be remembered that one of the strong points that has favoured the development of care systems has been the need to relieve the health system (which is more expensive than social services and less efficient in terms of personal care in daily life) of the need for personal care, while at the same time creating forms of coordination between the two systems.
The general trend in all European models of care has been towards decentralisation and unequal forms of coordination between social and health systems
- In the new care systems, the institutional division of care is a complex structure. The public sector recognises the right to protection as a subjective right, guarantees basic and common benefits that materialise the right throughout the territory of a State, intervenes with complementary programmes and actions to balance the supply of services in the territory, favours forms of governance that promote coordination and cooperation between the different administrations and systems (social services and health) and, finally, regulates taxation to favour complementary benefits that may be offered by private insurance. From here, the other spheres intervene either with their time and resources (family), or through the provision of public services (social economy) or through the provision of public services, private services and forms of complementary insurance (the case of the commercial sector). In this way, a mixed structure of intervention has been created in the national care systems, where the greater or lesser weight of each agent depends both on its traditions and on the political options at any given time. Underlying these mixed systems, which are not exempt from complexity, is the fact that the subjective right to social protection in this area has gradually made its way between the different countries of the European Union, although the quality and content of this right shows us great diversity.
The restructuring of the Welfare State and the trend towards greater demands for fiscal consolidation, due to the intense impact of the economic-financial crisis, undoubtedly favours a mixed system which extends the field of private provision of services, as a collaborator of the public sector and also as its own provision to higher income groups. In this context, the intervention of the State, as an institution with the competence to guarantee the necessary social and territorial balances and with the capacity to redistribute resources, becomes perhaps more necessary to guarantee not only a minimum protection in the national territories of each State, but also the cohesion of the entire system of care for dependency.
b) Recent trends in change
The consolidation of the development of dependency policies and systems is a fact in many EU countries, with uneven development in the southern countries of the EU and a clear delay in their creation in the countries that have recently joined (Eastern Europe). But maintaining the current systems, under their guidance of universal coverage, quality and sustainability, does not mean that reforms or counter-reforms cannot take place that tend to reduce the protective intensity or developments that return part of the care burden to the family. The tensions between social and demographic changes (pushing towards new forms of socialisation of risk) and financial trends (pushing for the containment of public expenditure and cost sharing between society, family, user and state) are now evident. In this sense, and although social policies are a national competence, there is no doubt that the convergence trends in the EU as a whole will mark the direction and content of the policies of attention to dependency within the wide diversity that exists.
The development of dependency systems in the countries of the European Union can be seen in the tensions between social and demographic changes (which are pushing towards new forms of socialisation of risk) and financial trends (which are pushing for the containment of public expenditure and the sharing of the cost between society, the family, the user and the State)
Thus, the following are common trends of change in LTC models in the European area:
- Fiscal consolidation policies that seek to contain LTC spending, with differences between countries, although the demographic factor tends to hold back adjustment. There is a relative shift from the logic of risk socialisation to the logic of individual and family responsibility, while state and regional LTC systems are expanding. This does not mean that the state withdraws, but rather discharges part of the responsibility assumed by transferring it back to citizens and households. All this implies a weakening of the protective intensity, even though coverage remains universal. Stricter rules for entering and remaining in the system and tighter benefits are part of this change that tends to be slowed down by social and labour changes.
- Increased citizen responsibility means not only greater co-payments for benefits but also recourse to private provision as a means of completing and improving services. This produces intense processes of inequality which segment citizens: those who lack proven resources (lesser test) can access the system, although with benefits which may be limited in quantity and even quality; high income population groups resort to the market both because the high co-payment excludes them and because of the demand for quality or personalised services; finally, middle income groups access the LTC system, bear high co-payments without having the capacity to resort to the market, as J. Montserrat Cordorniu (2019) shows in the case of Spain.
- A greater presence of the commercial offer in the provision of social and health services, partly displacing the non-profit offer, which has traditionally had a great weight in the management of care services. The objective of profitability implies that problems of quality and the existence of precarious employment (mostly women) are generated, which the public sector does not always have the effective capacity to control.
- Finally, a certain return to the family, i.e. to women as carers: either because of the difficulty of finding a job, or because social benefits compensate for caring for a dependent person rather than continuing with a precarious and poorly paid job, or because the working middle class woman prefers to be replaced by a vicarious carer (usually a migrant woman) and not have to resort to limited care services. In other words, a segmented refeminization of care is taking place according to women's position in the labour market in a context of change in which the distribution of the burden of care between men and women is developing very slowly due to the crystallization of traditional or "moral" patterns on the role of care.
In sum, with wide differences between EU member countries, recent changes in the LTC systems indicate that states are maintaining the overall goal of universal coverage but reducing the protective intensity and shifting a greater cost or burden of care onto citizens; that citizens are being called upon to take greater responsibility for responding to risk through high co-payments and the use of private provision to supplement or improve care; that market supply is growing at the expense of direct provision by the state and the social economy; finally, a segmented re-feminization of the burden of care is taking place, which represents a certain step backwards in the process of socialization of risk that began in the Nordic welfare system forty years ago.
2. Long-term care as a consequence of the social impact of the Covid-19 Comprehensive person-centred models
Amongst its many impacts - health, social and economic - Covid-19 has had a dramatic and unique impact on the homes where dependent people live and, less visibly but no less importantly, on the people who live in their homes in a situation of fragility, isolation and loneliness. Overall, it can be said that the LTC systems, at least in countries such as Spain which are still unconsolidated due to their financial weakness and unsound forms of governance, have faltered, hitting their limits in their real capacity for social protection of people in a situation of dependency and fragility. In this sense, we briefly highlight below for the case of Spain the limits of the residential care model and the need to advance towards a comprehensive, person-centred model.
On the crisis of the residential care model. Residences are a fundamental resource of the LTC system. In the case of Spain, 4.2% of the population over 65 years of age lives in residential structures, the vast majority of whom are dependent (Abellán et al, 2020). The rest of this group live at home autonomously, mostly supported directly or indirectly by the family, and in different cases with the support of tele-assistance services (covering 10.4%), home help services (5%) and day centres (1.07%), which are generally compatible.
The pandemic has had a great impact on the elderly population, especially those suffering from various pathologies. Almost 95 per cent of excess mortality between March and May 2020 has been among the population over 65. But the pandemic has had a very intense impact on the elderly and disabled population living in residential homes. The causes of this impact are both structural and conjunctural.
The structural causes of the impact of the pandemic on the elderly population are unresolved cumulative problems such as: over-aging of the residential population, high concentration in large residences or "car parks", high precariousness of employment, low medicalisation and limited quality control
Among the former, it should be noted that the crisis has revealed unresolved cumulative problems such as: the over-aging of the residential population, the high concentration in large residences or "car parks", the high precariousness of employment, low medicalisation and limited quality control. These problems, which have not been resolved in previous years, explain a large part of the socio-health impact of the pandemic. Amongst the economic factors, it is worth highlighting the adverse selection or triage of the elderly population in residential homes who had to access public hospitals (which they usually did without problems) and an unbalanced governance in which responsibility and cooperation between public administrations and social and health systems have been conspicuous by their absence (Médecins sans Frontières, 2020); in short, the breakdown of the necessary administrative and healthcare control. This crisis does not imply questioning the need for residential resources as another part of the long-term care system. Nor does it mean questioning existing good practice in a large part of the Spanish residential system. In other words, residential homes are a necessary care resource for people with serious and severe dependencies. The challenge is to adapt the residences to a model of care centred on the person, with appropriate services and comprehensive care. Nor is it a question of sanitising the residences but rather of moving towards humane and efficient residential sizes, with easy access to the health system, without exclusions and with the organisational and professional capacity to react to crisis situations, guaranteeing control by the Public Administration and by the users and relatives of the residents. In this sense, professionals in the sector and experts in geriatrics and gerontology have expressed themselves in the midst of the pandemic (VVAA, 2020).
Towards comprehensive models of person-centred care. The vast majority of older people live independently at home, even with moderate, severe and severe limitations and dependencies. These people are partly supported by services, which are still insufficient today, and are mostly supported by family or informal carers. The problem under discussion is how to move towards comprehensive models of care which are characterised by the centrality of the person (Rodríguez Rodríguez, 2013), which have sufficient, coordinated and quality social and health resources and, finally, which are sustainable in the broadest sense, socially, institutionally and financially (SEGG, 2017).
The problem under discussion is how to move towards integrated models of care that are characterised by the centrality of the person, that have sufficient, coordinated and quality social and health resources and, finally, that are sustainable in the broadest sense, socially, institutionally and financially
This approach implies progressing towards a care society that cuts across the entire social structure. Caring and being cared for are part of the same equation. This means guaranteeing the social right to care by society and the State, whether at home, in a residence or in community structures that combine different types of resources. Person-centred comprehensive care, guaranteeing the autonomy of the person and participation in the design of care, is the new paradigm that is emerging as the philosophical and moral foundation of the care society.
Among the practical consequences of this new approach are the need to strengthen home and community services and the humanization of residences, new commitments to coordination between administrations and between health and social systems, and the improvement of the quality of the labour market for professional carers. Underlying this new approach is the fact that a care society is not possible without sharing the burden of informal care and without an institutional commitment to a comprehensive LTC system.
In short, the LTC systems of the EU countries that have progressively evolved since the last quarter of the last century from care models to universal models of social protection, in a framework of very intense social and family changes, are at a crossroads where, on the one hand, there is a powerful current of burden-sharing of care for dependent persons within households and a demand for care in the environment and at home and, on the other hand, a debate on the future sustainability of the LTC in very ageing societies. A crossroads that forces us to think about and design new forms of social and institutional response to the need for care.
References
Abellán A., Aceituno P., Fernández I. y Ramiro D. (202), Una estimación de la población que vive en residencias de mayores, Madrid: CSIC. Envejecimiento en Red.
European Commission (2014), Adequate social protection for long-term care needs in an ageing society, Report jointly prepared by the Social Protection Committee and the European Commission. Brussels: European Commission.
European Commission (2016), Joint Report on Health Care and Long-Term Care Systems and Fiscal Sustainability and its country reports, Directorate-General for Economic and Financial Affairs and Economic Policy Committee (Ageing Working Group), Brussels: European Commission.
Marbán Gallego, V. (2019), El sistema español de atención a la dependencia. Ente la recesión y las reformas, VIII Informe Foessa. Documento de Trabajo 4.9. Web Fundación FOESSA.
Médicos sin Fronteras (2020), Médicos sin Fronteras (MSF), Poco, tarde y mal. El inaceptable desamparo de los mayores en las residencias durante la Covid-19 en España. Documento de Trabajo - 2020/05Madrid: Médicos sin Fronteras.
Montserrat Codorniu, J. (2019), Sostenibilidad del sistema de atención a la dependencia, Papeles de Economía Española, nº 161, p.164-185.
Ranci C. and Pavolini E. (2013/eds.), Reforms in long-term care policies in European countries, New York: Springer.
Rodríguez Cabrero, G., Marbán, V., Montserrat, J. Moreno, F.J. (2018), ESPN Thematic Report on Challenges in long-term care, Brussels.: European Commission.
Rodríguez Cabrero, G. y Marban Gallego, V. (2020), ESPN Thematic Report: Contribution to the 2021 SPC-COM report on long-term care for older people in the EU. Spain. Brussels: European Commission and ESPN.
Rodríguez Cabrero, G. (2019), Longevidad y Dependencia. La nueva contingencia del siglo XXI, Ekonimaz nº 96, p.139-169.
Rodríguez Rodríguez, P. (2013), La atención integral y centrada en la persona, Papeles de la Fundación Pilares para la Dependencia, 1, 2013.
Spasova, S, Baeten, R., Coster, S., Ghailani, D., Peña-Casas, R. y Vanhercke, B. (2018), Challenges in long-term care in Europe A study of national policies 2018, Brussels: European Commission and ESPN.
Sociedad Española de Geriatría y Gerontología (2017), Estudio Delphi: Escenarios de futuro de la atención integrada y centrada en la persona, Madrid: SEGG.
VVAA (2020), Declaración Conjunta: En favor de un necesario cambio en el modelo de cuidados de larga duración”. Webs: EnvejecimientoenRed, Fundación Pilares y acpgerontologia.com.
Pregunta
Respuestas de los expertos
Among the necessary changes, much has been said - and rightly so - about the need for integration/coordination of social and health services and the benefits of person-centred care as key elements in achieving decent, quality and sustainable care for older people. However, the same emphasis has not been placed on the rights of this group which underpin these changes. We refer specifically to the urgency of fully implementing the Convention on the Rights of Persons with Disabilities (CRPD), almost 14 years after its adoption by the United Nations General Assembly. Spain was one of the first states to sign and ratify it and, therefore, to incorporate it into our legal system. We must consider that the principles and rights established by this regulation are applicable to the elderly in a situation of dependence - who are the ones who occupy the majority of the places in the homes.
The application of this Convention, drawn up under the rights-based approach, would surely have made it possible to face the impact of Covid-19 with greater guarantees. What is certain is that the CRPD is an obligatory guide to face the necessary changes of the future post-Covid. The framework for action is determined by the general principles it establishes, such as respect for inherent dignity, individual autonomy, including the freedom to make one's own decisions, and independence of persons; non-discrimination; and full and effective participation and inclusion in society (art. 2, a, b and c).
What is certain is that the Convention on the Rights of Persons with Disabilities (CRPD) is an obligatory guide to face the necessary changes of the future post-COVID
From these principles stem the specific rights established by this rule, which in relation to residences must be considered especially the right to recognition of their legal capacity and the measures relating to their exercise, which must respect the rights, will and preferences of the person; to live independently and be included in the community, i.e. to be able to choose their place of residence and where and with whom they live and not be forced to live according to a specific system of living, such as a residential centre; the right to enjoy the highest attainable standard of health without discrimination on the grounds of disability; and the right to habilitation and rehabilitation (arts. 12, 19, 25 and 26, respectively).
In short, the CRPD imposes respect for and empowerment of the autonomy of the dependent elderly person and the right, if he/she so wishes, to live in his/her own home, with the provision of reasonable accommodation and the necessary technical and economic support to be able to live with dignity and in accordance with his/her life plan.
How the COVID-19 crisis has highlighted the shortcomings in nursing homes. Proposals for reforming the Law for the Promotion of Personal Autonomy and Care for Dependency
The COVID-19 health crisis has highlighted the insufficient number of carers, the high level of job insecurity and the lack of health care in retirement homes, together with other structural and organisational deficiencies. The result is that many centres have had to be rescued or have their users moved to other residences. Likewise, it has questioned not only the current model of care for people in a situation of dependency but also the system of long-term care implemented in Spain in December 2006.
The structural and organisational deficiencies observed during the health crisis are largely due to the inefficiency of the health and social administrations, which were unable to establish and exercise the mechanisms for quality control of care and establish the protocols for social and health coordination in order to prevent the situations of neglect that have occurred in this health crisis.
The structural and organisational deficiencies observed during the health crisis are largely due to the inefficiency of the health and social administrations, which were unable to establish and exercise the mechanisms for quality control of care and establish the protocols for social and health coordination in order to prevent the situations of neglect that have occurred
This is particularly serious when almost half of the places in private residences are contracted and financed directly by the public administrations to care for the beneficiaries of the Dependency Act (Act 39/2006), or indirectly by means of economic aid to individuals through service-related benefits. Administrations should reflect on the profit included in the prices of the concerts, which have allowed companies to distribute dividends while maintaining an insufficient number of staff with a high level of job insecurity that did not guarantee adequate quality of care for users.
On the other hand, the Administrations should examine whether the centres really comply with the requirements of the "effective" personnel ratio established in 2008 in the Agreement of the Territorial Council on common accreditation criteria to guarantee the quality of the SAAD centres and services, with the personnel meeting the criteria of this Agreement. It should be borne in mind that the high proportion of jobs with temporary contracts - a quarter of the total - with a high turnover, means that the number of "effective jobs" is significantly lower than the nominal number of employees during the year. Job instability has an impact on the quality of care. They should also put pressure on the centres to comply with the proportions of professional qualifications established in the aforementioned Agreement.
The Administration should promote the dignification of the working conditions of workers in these centres. One of the facets of labour precariousness is manifested in minimum wage payments that do not correspond to the demands of work and the physical and emotional effort that workers must make in caring for people. The existing working and salary conditions have made it difficult to find staff willing to make replacements, resulting in more underdimensioned staff than those previously in place. It should be remembered that, to make up for this effect, some administrations have chosen to allow the recruitment of staff, even if the applicants do not have the relevant professional qualifications.
A future reform of the Act for the Promotion of Personal Autonomy and Care for Dependency should review different aspects of the financing of the provision of the residential service. Firstly, determining clearly the cost of the service, including the ratio of personnel and agreed professional qualifications, guaranteeing job stability, effective employment and decent remuneration for the workers.
Secondly, the percentage of the cost of the place corresponding to the "care module" and the percentage corresponding to the "hotel module" - the latter being equivalent to the co-payment - should be determined, establishing a limit on the latter in relation to the total cost. Consideration should also be given to whether the user should finance the "amortization", i.e. the replacement of the investment made by the company, and whether he or she should finance the company's profit from whose dividends he or she does not benefit.
Thirdly, to review the current system for sharing costs between the National Government and the Autonomous Regions. The financing of the Minimum Level should not be based only on a flat rate according to the degree of dependence of the beneficiary, but should also take into account the cost of the service provided.
The residences require a profound reform with the following changes:
- A greater role for the public sector in quality control and accreditation of the centres. Also strengthening the defence of the rights of residents in line with the latest recommendations of the People' s Defender (Recommendations on nursing homes, health care and emergency information Covid-19; available at https://bit.ly/3c5gnpD
- Structural changes: ratios of workers per resident and adequate quality jobs, increased funding of social services for the elderly, more inspections of residential centres and improved socio-health coordination.
- Change in the care model: to promote adapted housing and put more emphasis on person-centred care, based on the organisation of the centres into small cohabitation units, with a home structure and dimension, in which a small number of elderly people live together and are provided with personalised support.
- Nursing homes are a necessary resource, but they should be oriented towards dependent people who cannot manage in a community or home environment and who have intense social and health care needs. The European trend is to live together at home or in the community as long as possible, supported by the intensification of resources such as home help, advanced teleassistance and respite services such as day and night centres.
The European trend is to live together at home or in the community as long as possible, based on the intensification of resources such as home help, advanced telecare and respite services such as day and night centres.
A. Measures to be implemented in nursing homes
The covid19 infection has had a tragic impact especially on elderly people (also, though less numerous, for people with disabilities) living in residential homes. The pandemic has put the spotlight on a deficient reality that is not new and has now been revealed in all its harshness. There has been a violation of the right to epidemiological measures and specialized health care for people who were in the residences, which has been the cause that has most influenced the excess mortality that we have suffered in Spain.
For this reason, measures such as the following are considered necessary, once the emergencies derived from the pandemic have passed:
- To guarantee the right to public health from the SNS for all elderly people, wherever they live, with special emphasis on residential homes. This implies that the medical, nursing and physiotherapy teams that provide services in the care centres must depend on the health services of the respective Autonomous Communities, with the same salary as the Primary Care teams to which they will be assigned. This would put an end to the current reality that a low-cost health care system has been created, which is paid for by residential care providers (public or private) and passed on through co-payment to residents. It would also address the discrimination that occurs in access to the health care system for elderly people living in residential homes.
- To guarantee the effective exercise of the rights and freedoms of elderly people and people with disabilities in vulnerable situations, providing tools and training to family and professional carers so that they can first identify the situations in which this violation of rights occurs and then learn how to respect them and how to empower people. According to research carried out by our Foundation, the forms of violation of rights are particularly striking in the case of residential homes. In addition to the already mentioned right to receive specialised health care, other rights that are violated on a daily basis are: the right to autonomy in decision-making, the preservation of privacy, the use of goods and services, emotional and sexual relationships...
- To give priority to public social services that guarantee those considered basic or essential, with the preferential collaboration of the third sector of social action to agree on and/or cover social services. As regards collaboration with providers from the commercial sector, great care will be taken to ensure that they operate within an ethical framework that does not compromise the quality of care.
- Strengthening and guaranteeing the inspection and control by the Administration of public and subsidised services for the care of the elderly, disabled or dependent persons, without forgetting the public responsibility that the duty of vigilance of private services entails.
- In line with the improvement of quality, it is necessary to make the social services sector more professional, especially in the field of CCD, and, in the case of residential homes, to increase the training and skills of professionals. The aim is to ensure that, in addition to correct care to improve functionality in ADL, cognitive disorders and treatment of diseases and disorders, the methodology and techniques of person-centred care are deepened, consolidated and brought into professional practice. This means developing an authentic relationship of help and accompaniment impregnated with ethical principles and based on the preservation of inherent dignity and the exercise of all our rights.
Making this change requires an increase in the ratios of people in continuous care (managers) and an improvement in their remuneration.
B. Measures to be implemented in general
We have scientific evidence and recommendations from international bodies about the need to move towards integrated and people-centred models in the field of long-term care (LTC).
In this sense, the measures proposed are:
- Change the current model of care, which is markedly paternalistic, to one that is integrated and people-centred (AICP). Within this framework, priority should be given to community services, including within this concept also residences and other social service accommodation.
- To make a firm commitment to the quality and social and scientific consideration of social services, by investing in planning, social research, innovation and systematic evaluation of services and programmes to ensure that they can be worked on, as is the case in the health system, on the basis of scientific evidence.
There must be a strong commitment to the quality and social and scientific consideration of social services, through investment in planning, social research, innovation and systematic evaluation of services and programmes
- To guarantee the training of care families with PECEF and the monitoring of the quality of care, also providing respite services and help for their subsequent return to the labour market.
. Strengthen the real participation of the elderly, disabled and others who use social services in the design, management and evaluation of public policies that affect them
C. A State Pact
The way forward along the above lines should be through a major Pact between the Autonomous Regions, the General State Administration and Local Administration which should include the following measures:
- Reform of the Act on the Promotion of Personal Autonomy and Care of Dependent Persons (LAPAD), which, on the one hand, ensures the funding that corresponds to the National Government and reverses the cuts made in 2012. And, on the other hand, that it clarifies, contemplates and improves the services for the promotion of personal autonomy; the home care services, the support and training of the care families and the various alternatives for future accommodation. In addition, the LAPAD should include social and health coordination / integration to guarantee the comprehensive and continuous care that many people in situations of dependency and chronicity require. This is a vitally important issue that was not developed at the time of drafting this law, nor was it done in the 2003 Law on the Cohesion and Quality of the NHS, nor has it been addressed subsequently, with the pernicious consequences that have been occurring and which have now come to light in all their harshness. The reformed Act will also include the rights to be protected of persons in a situation of vulnerability or dependence and the guarantees for their effective exercise.
- Redesigning the Home Care Service in order to configure a set of integrated and person-centred services for home and community care as a way of guaranteeing that there is really support for staying at home and in the community. They should be integrated and be able to compact packages of services (with the necessary reasonable limits) planned according to the real needs of each case. In addition to ensuring integrated health care and social services, this should include support for families, telecare and other technological devices, day centres, adaptation of housing and provision of support services. Likewise, consideration should be given to removing the existing obstacles to making the personal assistance service effective, the participation of volunteers and other initiatives to be incorporated from a community and participation work that contemplates the co-production of services and takes advantage of the community's resources in a synergetic way.
To facilitate this integration of services and to carry out the personalised accompaniment of each person and family, it would be convenient to implement the case management methodology, as has been done, for example, in Germany (which has incorporated it as a right in its Care Act) and it works in Nordic countries, such as Sweden.
This model is recommended by the above-mentioned international organisations, and there is scientific evidence of its good results: it avoids unnecessary institutionalisation, deals with chronic situations in time, prevents or delays the increase in dependency and, furthermore, it is cost-effective.
Commitment to a new model of residences and other accommodations in which, in addition to guaranteeing care from the NHS, work is done from a comprehensive and person-centered care approach (AICP). This requires, for the centres that already exist, a process of training-action-accompaniment, together with an increase in the ratio of geroculturists, in order to transform the model.
- For the new investment plans, new and varied architectural designs must be chosen (flats with services, shared housing, intergenerational, coexistence units...) that incorporate guarantees of quality social and health care and accompaniment to the unique life project with professionals trained in rights, ethics, aid relationships, etc. The model of social health centre, institution type, must be rejected outright as a residence to live in because of its proven inability to offer living conditions that are in line with what we all want for our old age. It should only be adopted as a medium-stay centre dependent on the health system for rehabilitation processes, palliative care, etc.
- To support the initiative of the elderly themselves on new residential models, such as cohousing or collaborative housing, through the transfer of public land and easy access to community services.
- To implement programmes aimed at alleviating the loneliness of the elderly and people with disabilities that promote intergenerationality and the regeneration of community support networks. A programme that worked very well in 2009, designed at the initiative of IMSERSO under the name of Cerca de ti, could be reviewed and updated. It was developed in collaboration with the FEMP, telecare providers, the Red Cross and Caritas, and combined intervention with professionals, technology and volunteers, while encouraging the whole community to participate.
- To develop awareness campaigns aimed at society as a whole in order to advance in the best knowledge and highlight the value of social services and their professionals (they are still the great unknown and they are the source of stereotypes and false beliefs). These campaigns should emphasize and support the social value of care as a social good that we must promote and protect. This should also include the recognition and appreciation of the work and initiatives of social entities, citizen and neighbourhood movements, etc., which has been evident during the COVID crisis19.
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