Manuals for professionals on decision-making support for people with disabilities
On June 3, 2021, the Official State Gazette (BOE) published Law 8/2021, of June 2 , which reforms civil and procedural legislation to support people with disabilities in the exercise of their legal capacity. The name is quite long, and the subject matter it deals with is very complex. From a foundation in human rights, it projects immense social challenges and implies the need to adapt many processes that affect people with disabilities .
The first to notice it will be the processes in the legal field, where we will see that interpretations proliferate on the scope of the reform among the different actors. Nor will it be easy to apply the reform in the ordinary functioning of the operations of the economic market, I point out only as an example but sensing a major disruption, in banking operations. Progressively, because it will not be all at once, and from my point of view much more important, in the social and generalized recognition of the right to self-determination and that the decisions in any human life are guided by one's own will and preferences.
In three months, the time that the rule has foreseen for its entry into force, two institutions that most citizens have an idea of how they functioned will be eliminated from the legal system: incapacity and guardianship (with respect to adults).
And here comes one of the challenges! since new concepts such as " universal legal capacity" or " support for decision-making" do not enjoy this widespread knowledge. It will take a lot of work to disseminate them and make them popular.
Learn to respect people's decisions
It has been 13 years since the International Convention on the Rights of Persons with Disabilities , the Human Rights treaty that underpins the reform, has been in force in the Spanish State and during this time much more could have been done to ensure that the principles of the norm were better known, more recognized and, if possible, internalized by the maximum number of people. This time has not been used sufficiently and now - for some people - they will find themselves immersed in it without seeing it coming.
We will all need to learn to always respect the decisions of all people, regardless of the disability they have and whether it interferes more or less with the intellectual, mental or cognitive functions that we use to manage our processes when making them, as well as, and very importantly, when we are asked or when it is appropriate, we learn to support decision-making instead of deciding what we consider appropriate in people's lives.
This last issue, fundamental to making the rights enshrined in the Convention a reality, will not be easy at all. Most professionals in social and health services, but not only, have been trained - in fact those in university still do - and have grown professionally within the framework of what we call the "medical model" of disability, and we have been trained to analyze the functionality of people and their contexts, assess difficulties, risks and conflicts, and prescribe what we consider to be the best for people with disabilities, always in their "best interests".
The necessary adaptation of specialized social services
In fact, this is the mental framework in which most of the specialized social services that we have today in our country have been conceived and developed, these services are the ones that allow us to receive the public resources that society is willing to allocate to support people with disabilities. Many of these services respond to a culture of institutional response, in which people with similar characteristics receive similar support, organized in groups based on this best interest.
These services and the thousands and thousands of professionals who work there, but not only that, since this also means legislation and public policies, will also have to adapt to the recognition of the capacity to decide of all people, as well as to the fulfillment of other rights recognized and very explicit in the wording of the Convention such as the right to independent living and inclusion in the community, to put the most transcendent in my point of view.
More than a decade of incongruent rulings
At Support-Girona, many years ago we assumed that the conceptual framework that would accompany us until the end of the professional careers of those who work there would be that of the Convention and of Human Rights for all people, and that its article 12, entitled "equality before the law", would change the theoretical foundations of our work. We came from the exercise of guardianship, and representative powers, and from the use of the criterion of "best interest" to guide the subrogated decisions that we have made for the benefit of the people for whom we have responsibilities.
We were created to use the tools of guardianship and the framework of the specialized social service with public funding that allows us to accompany people with a certain intensity of social work, first of all as another element in the process of deinstitutionalization and emptying of the long mental health stay in Girona, although we soon had to fill a much larger void and act as a support service with the capacity to provide a lot of intensity of social work, but also legal and economic management powers, in the personally and socially conflictive situation of many people.
The validity of the Convention did not have a significant impact on the work of guardianship entities. In Support-Girona neither. In fact, we did not see the significance of article 12 until we discovered that the Supreme Court Judgment of April 29, 2009 , which briefly stated that incapacity and guardianship were instruments compatible with the Convention, if they were used to maximize rights and not to limit them (sic), was an absolutely wrong legal construction. If we are being misinformed, a construction only intended to calm the momentum of the prosecution, which defended a position much closer to the brand new reform of the legislation that has been made 12 years later, and intended that the jurisprudence would blow up the legislation in force at the time, giving the legislator time to digest it more calmly and end up promoting a complete reform, despite the fact that the Convention was a current legal instrument that contradicted the laws. This has led to more than a decade of incongruous rulings, which mentioned the Convention and its Article 12 among the legal foundations, while a few paragraphs later, in the operative part, declared the total incapacity and submission of a person to guardianship.
The real discovery of the changes that will accompany us for many years came with the publication of General Comment No. 1 of the United Nations Committee on the Rights of Persons with Disabilities , which provided us with an authentic interpretation of the content of the right recognized in Article 12 of the Convention and the obligations that this implies for States. This document clarifies what legal capacity means in equal conditions in all aspects of life , even in crisis situations, and what it means to support decision-making, in the sense that it should never consist of deciding for people and that, only in extreme cases, it can mean interpreting what the person's will would be, but never deciding in their best interests. I will not go into detail, but it is the key and most important document for understanding the current reform and the implications it will have in areas that have not yet been reformed, such as situations of involuntary interventions in mental health, for example.
Cristina Arjona Gargallo
What a revolution for an entity like ours!. Surely no professional or entity has ever wanted to decide arbitrarily in the lives of others, but we have done so if we have had legal powers and have not found a different way to resolve problems or conflicts. But from General Comment n.1, it was up to us to internalize that the general criterion must be not to exercise the powers of subrogated decision that laws and judgments have given us, to let them decide and to accompany them in the decisions without interfering in them according to the criterion of the best interest of the person. It was up to us to support the decision-making process but respecting the rights, will and preferences of the person.
This is very easy to say and write, and very difficult to do in day-to-day practice. Many factors work against it, including social awareness about managing risks and responsibilities regarding the lives of these people, the vision of families when they perform support functions, the vision of professionals - trained, as we have said, in the old paradigm - and the generalized idea of how some people should live their lives.
But we encountered another limiting factor: all the literature on decision-making support and universal legal capacity for people with disabilities is legal literature, from the field of Human Rights, but not at all practical and very little thought about the direct application in the functions of professionals in the social field. Therefore, we did not have many references to get it right.
At the same time, and as a result of having assumed the Convention as a guide for our evolution as an entity, we began to promote, in our environment, the figure of the Assistance of the Catalan Civil Code as the legal mechanism that best fits the Convention, among those that exist and according to our criteria. This tool recognizes the legal capacity of the person, the will of the person without which the judicial procedure is not activated -very flexible and easy-, the will of the person regarding the areas in which they need support, and the will of the person regarding who should be the natural person or entity that offers this support. The provider of assistance can never act against the will of the person, since "the assistant must ensure the well-being of the assisted person, fully respecting their will and personal choices". The person can also end assistance whenever they wish. We have managed to ensure that the number of people we have linked ourselves to, based on their will, through assistance, is significantly higher than the number of guardians or curators that the courts have assigned to us over the last three years.
As was the case when we tried to apply the new paradigm to our work, at first we did not have a specific way of approaching the new paradigm, neither in care relationships nor in other support situations, which were still regulated according to obsolete legal figures. We also did not have many options for copying methods and procedures. We immediately saw that we needed to improve active listening to learn about people's will and preferences, since they are not always obvious, but we also immediately saw that these can be changing, and that we do not always communicate well enough to identify changes in these wills and preferences. We also needed mechanisms that would allow us to establish, at a specific moment, the person's concerns, the conflicts or issues for which they want support, their priorities when dealing with them, what they don't want... but also the view of the support professionals on the alternatives, the difficulties we observe, the possibilities available to us, and that this would make the relationship between the people we support and the professionals more solid. And at the same time we needed these mechanisms to be configured to be agile and flexible so as to adapt at all times to the changing circumstances of the person and the evolution of their will. In our practice, the idea of Support Agreements emerged as a tool, as heterogeneous and unique as the people we support, but with common elements that allow us to recognize and shape them.
Also, as we contacted people from all over the world interested in the issue, and more intensely with people and entities in Europe, we saw that we could use European funding to co-create new knowledge and tools together that would make it easier for professionals to put into practice decision-making support processes.
A project with the decision-making support agreement as its main focus
All of this came together so that in 2016 we agreed to work on the configuration of a European project, within the framework of the Erasmus+ program, which ended up being the I-DECIDE project.
The I-DECIDE Supported Decision Making using Digital, Literacy & Numeracy Skills project is based on the "decision-making support agreement" as a voluntary instrument to provide both the person and the professional with a formal or semi-formal starting point, in which the will and preferences of the person requesting support in one or some spheres or areas of their life are recognized and, at the same time, the professional commitment is acquired to offer the person this support by explaining the real possibilities and also the limitations. We also thought that the project products could be used in any service in which a potential professional is in a position to provide support in decision-making in the development of their task.
One contribution that emerged from the international collaboration in the project was that the I-DECIDE support agreement introduces the possibility of the facilitator figure, with a supervisory or safeguarding function, as a guarantor of the agreement between the person being accompanied and the support professional. This figure seeks to avoid flawed situations in which abuse or undue influence can occur and to correct the temptations that support providers may fall into habits of the old paradigm.
In addition, I-DECIDE develops instruments and tools that allow the professional to develop an action plan to materialize - or not - the desires, will, and preferences or expectations expressed and formalized in the support agreement, so that they can evaluate the skills or competencies of the person they accompany to overcome barriers and conflicts in the management of their decisions, and to individualize the support that is offered both directly and through the network of resources, programs, activities or services in the environment to which they have access, with the idea of promoting inclusion in the community as much as possible.
The result is a method, I-DECIDE, training materials and manuals that should provide "trenched" professionals with support in decision-making in general, and in matters of consumer rights, health or personal finances in greater depth.
Obviously, these are materials and contents that can be greatly improved, which is why we are considering a new I-DECIDE+ project that refines aspects that we have already observed in the use of the method, and delves into some other relevant issues, such as risk management and the role of responsibilities regarding the results of decisions within the framework of the new paradigm.
We hope that the use, and also the constructive criticism, generated around the I-DECIDE project and its materials will yield many benefits in facing the practical challenges that recognizing universal legal capacity entails.
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