"The Law on Dependency was not adequately funded to carry out what it promised"

The Law on Dependency was created to respond to groups of dependent people, setting up a network of resources to assist them and guarantee an independent life on an equal basis with other citizens. Ten years after it was passed, the reality is quite different. In order to analyse the current context and understand the evolution of the implementation of the Law, we talk to UOC professor and researcher Israel Rodríguez-Giralt, who leads the CareNet research group. Rodríguez-Giralt is an expert in social movements and political activism related to health and dependency assistance social policies. His academic career was recognized with the Amsterdaska Award 2014, and with Manuel Tironi and Michael Guggenheim he jointly edited the book Disasters and Politics. Materials, Experiments, Preparedness (Wiley-Blackwell, 2014).

The Law on Dependency was created to respond to groups of dependent people, setting up a network of resources to assist them and guarantee an independent life on an equal basis with other citizens. Ten years after it was passed, the reality is quite different. In order to analyse the current context and understand the evolution of the implementation of the Law, we talk to UOC professor and researcher Israel Rodríguez-Giralt, who leads the CareNet research group. Rodríguez-Giralt is an expert in social movements and political activism related to health and dependency assistance social policies. His academic career was recognized with the Amsterdaska Award 2014, and with Manuel Tironi and Michael Guggenheim he jointly edited the book Disasters and Politics. Materials, Experiments, Preparedness (Wiley-Blackwell, 2014).

We could say that the Law was extensively promoted by an ambitious media and advertising campaign. People talked of a great revolution in Spain, of responding to the fourth pillar of welfare, together with pensions, education and health. The Law was also ambitious in terms of infrastructures, resources and public institutions dedicated to promoting personal autonomy. However, the reality has been very different almost from the outset. There have been many problems of implementation and funding, along with much discussion and controversy about the classification of the applicants, which has changed and been readjusted downwards and always according to budget items. This has been a very ill-conceived law from the outset because it was not adequately funded to carry out what it promised.

The first project has basically studied the controversy created by the Law. We have monitored the activities of civil society, the groups that had been organized around this category of “dependent person”. The law created this figure, which indistinctly brings together highly diverse groups, such as people with chronic diseases, the elderly, people with disability and children with rare diseases. The Law classified them according to very imprecise scales, because they homogenized highly diverse situations. Our work was to look at the consequences of the Law’s development, which groups had been formed and how they were trying to participate in the public debate by making improvements to the regulations. From this a second project emerged focused on one of the big ambitions of the Law on Dependency, which was to promote personal autonomy and an independent lifestyle. Right when the Law was introduced, Spain ratified the Convention on the Rights of Persons with Disabilities, which includes some of the articles that cover the promotion of independent living. In other words, two very ambitious projects coincided in time.

The second project focuses more on those defending independent living at the Spanish level, what kind of activism has been carried out and what measures are being promoted. Much of the work studies experimental care communities. These are groups created in a context undermined by this Law and that seek solutions that we denominate as "outside the classifications" because they are not the ones stipulated by the Law or government agencies. They know their needs and rights very well and want to exercise them.

Yes, for many reasons. On the one hand, because of the homogenization and, on the other, the lack of a participatory culture at the time of creating the Law. Although many groups in some way tried to influence the Law, to help and contribute their knowledge and experience, in reality, the culture of experts dominated. This is the idea that "we know what's good for you and this is how we'll do it". It was highly damaging and also produced a worse law.

Despite seeking references in other European countries, there was probably no will to assume risks to create an ambitious enough law. This meant, necessarily, that the new law could be funded through an economic model based for example on contributions by workers and companies, as happens with Social Security, or through general taxation, as we do with health or education. In contrast, however, if we fund the Law with what remains in the public coffers at the end of the year without creating a sustainable economic system, everything is more complicated. This was a serious problem condemned by the groups from the start and that the Law did not want to tackle.

In a culture in which experts and professionals determine what people need in a situation of dependency, contempt for the experience-based knowledge of the groups, of the people affected, was palpable. The representatives of dependent people are qualified to participate in the debate because they experience discrimination due to disability 24 hours a day and this means they are in no doubt about their needs, what does not work and what is essential. Working from this experiential point you often come up against the discourse of the experts, who only understand a debate in their own terms, not based on this knowledge, which, unfortunately, is ignored. This is a reflection of the lack of a participatory culture in this country when legislating.

Yes. In fact, before the Law was passed, the two main political parties were contemplating the implementation of a law of this type because Europe was applying pressure. At that time, a reform was underway in this field at a European level. It was a very ambitious reform that affected, above all, the Southern countries that were more backward – compared with Holland, the Scandinavian countries and the United Kingdom – in recognizing the rights of disabled people. The socialist PSOE, led by José Luis Rodríguez Zapatero, won the elections, and the Law was passed and became a banner for his government. The problem is that they did not allocate it a big enough budget. The economic crisis was a major reason for putting these policies on the back-burner. It is a situation that always arises when dealing with issues related to disability. The discourses on rights cease to be important and the priorities focus on those who are more productive, from an ableist and economist vision, for society. When conservative leader Mariano Rajoy won, the crisis was the perfect excuse to dismantle many benefits. In England, where I conducted a two-year study, exactly the same thing happened.

Here, as in many other things, the history of Spain cannot be explained without reference to the Franco period and its consequences. The democratic transition attempted some reforms, but we still find it hard to achieve European standards in certain areas. In the case of the rights of people with disabilities, this is overwhelmingly apparent. The Southern countries have, in general, more fragile economies and a less developed welfare state.

In the case of providing assistance for dependent people and promoting autonomy, we were far behind in a model that the Franco regime had mainly left in private hands, in the hands of the families themselves, and with a very charity-based image of disability. The major Spanish associations still lean heavily towards this approach and this did not begin to change until the Foro de Vida Independiente was held in 2001. From that moment, this idea of “functional diversity” was created, with all its nuances, because despite being a highly contested and criticized concept, it is the first that they themselves have created to define the reality.

The law has only implemented two main initiatives of all those it promised. Pensions and economic help for families, which strengthen this care model based on feminization, have been consolidated, as has the model of old people’s homes, with public places for the elderly. Some things seem to be changing now at a municipal level, with the new political movements that have reached the councils. The problem is that the councils’ margin for manoeuvre is very small because the funding comes from the State or autonomous community. It is a situation that needs to change.

Absolutely, because we have to contrast this statistic with that of the active population, which is shrinking, with 50% youth unemployment, in the case of Spain. Therefore, as the pension system stands, we are not accumulating with our taxes what we will receive some years from now; rather pensions are paid according to the active population. This context makes it hard to conceive a plan we will be able to follow. The sustainability of the welfare state is one of the debates, at European level, because it will be one of the great challenges of the future.

This idea that it only affects others is very dangerous because it is unreal. It creates a false notion that it is not for you and, at the same time, greatly influences the making of bad laws because you are not making them for yourself. We go in and out of these situations at different times of life. It is absurd. We need help when we are young, we need help when we are old, if we have an accident or if we are ill. We should cultivate this idea much more. Thinking about ourselves from a perspective of vulnerability frightens us, but it is also what makes us human.

It is crucial. We must maintain the role of the university and, above all, the role of the public university, just as we understand it here, as a centre of research and innovation in these fields, when creating debates. One of the dangers facing research is excessive privatization of knowledge. The economic and social trends make knowledge a highly valued commodity and it is very easy to market it. The big corporations are also one of the most important centres of research and innovation but, although in some cases they allow researchers great autonomy, it is also a model that should be debated. The public university must play a role of independence and autonomy. It is the researcher’s job to be aware of the world created by our knowledge and how we can help improve our environment. We have to adopt certain commitments and be aware of the effects of our knowledge.