Good practices in supporting decision-making
Sometimes, people need support to make decisions in different areas of life. This is support that we all consider normal in our daily lives. However, historically, people with psychological, intellectual, or cognitive disabilities have been deprived of the right to make decisions or choose for themselves due to social prejudices and systems of substituted decision-making (such as guardianship and conservatorship) that remain in place in many countries.
The Convention on the Rights of Persons with Disabilities (CPPD) explains that "persons with disabilities have the right, on an equal basis with others, to be recognized as persons before the law and to enjoy legal capacity on an equal basis with others in all aspects of life."
Decision-making support is essential to ensure that people can make their own choices in all aspects of their lives, including the mental health care they receive. This approach recognizes that each person is unique and has unique support needs. It also recognizes that each person may need different levels and types of assistance to make decisions and choices at different times in their life.
The World Health Organization 's (WHO) fourth training webinar on the implementation of QualityRights has focused precisely on understanding how decision support works and how it can be successfully implemented in practice.
What is legal capacity?
Legal capacity is an inherent and inalienable right. It is the right that allows us to enjoy all other rights, such as participating in society and being recognized as full citizens. It is important not to confuse it with the concept of competence or capacity to act, which is the expression used to refer to a person's skills or abilities to make decisions. WHO training materials on QualityRights explain that, in the field of mental health, functional tests are often performed to determine if a person can understand information related to a specific decision, if they understand the consequences of that decision, and if they can communicate the decision. These tests, the WHO points out, are highly relative because the decision-making process cannot be scientifically measured. Decisions are made rationally or based on emotions or feelings. There is no universal or correct way to make decisions, as each person has their own thought process . In any case, it is an inherent right, even in crisis situations, regardless of a person's abilities to make or communicate them.
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Formal and informal decision-making
The right to decide affects all areas of life, and when this right is denied, we are denying the right to live one's life as that person wishes, including the right to make mistakes and celebrate successes like anyone else. Decisions have different levels:
Formal decisions, such as getting married, renting or buying property, signing contracts, or choosing one treatment over another, are typically made globally by court-appointed guardians, mental health professionals, or other specialists, and by family members. This process has various names depending on the country, such as guardianship, conservatorship, etc. In this context, women with disabilities frequently face multiple forms of discrimination related to their sexual and reproductive rights.
Informal decisions, such as how to use money, choose accommodation, personal relationships, clothing or food, and daily routines, are common. This is especially true for people in social and mental health services, and these decisions often end up being made by family members or caregivers.
Violation of legal capacity can occur in any space : in the community (school, work, etc.), in homes, in health or social care services, or in spaces where people are deprived of liberty such as psychiatric hospitals, forensic services, police or prisons.
The empowering effect of decision-making
According to the WHO, when a person makes their own decisions, they obtain the following benefits:
- An improvement in decision-making skills.
- An increase in self-esteem, self-confidence, and autonomy.
- Personal empowerment.
- Personal development as a human being and as a citizen.
- Broader interpersonal networks.
- A feeling of support, respect, and appreciation.
- An improvement in their personal relationships.
- Other people perceive her and treat her with the respect she deserves, a fact that contributes to fighting against stigma and discrimination.
As Michael Njenga, regional mental health advisor for Africa at CBM Global Disability Inclusion, states in this webinar: “Just like everyone else, people with disabilities should also be allowed to embrace the dignity of risk because, very often, the argument seems to be that, for example, people with psychosocial disabilities will make a mistake, will make the wrong decision, which we all do in our lives. For me, allowing them to take risks is an opportunity for them to make mistakes and also for them to learn from those specific mistakes, which for me is basically being part of humanity and human diversity.”
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Good practices from Catalonia
This WHO webinar featured presentations by Magda Casamitjana, director of the National Mental Health Pact of the Government of Catalonia , who explained the Catalan administration's commitment to implementing quality rights at all levels and, specifically, the use of support in decision-making because it generates opportunities for improving people's quality of life, promotes development, and facilitates a relationship of trust and dialogue between the person receiving care and the professional team, making the person an active and essential agent.
To understand the implications of support in decision-making and to learn about best practices, the webinar featured presentations by Ferran Blanco , project and innovation coordinator at Support Girona , and Xavier Orno , a person with lived experience of mental health issues and a Support Girona client. Michael Njenga , regional mental health advisor for Africa at CBM Global Disability Inclusion , also spoke, describing the situation on that continent.
Support Girona is a private, non-profit organization dedicated to providing legal and social support to people of all ages and abilities, including psychosocial, intellectual, and age-related disabilities. "Currently, we support more than 1,300 people, and we do so within the specific legal framework provided by the Catalan Civil Code, which differs from the Spanish one," explains Blanco. The organization presents two case studies of decision-making support that illustrate the type of assistance they offer and the relationship established with professionals. According to Blanco, "The right to legal capacity and the development of the support provided are meaningless if we don't consider the fact that a person has the right to live independently, the right to access healthcare services, the right not to be degraded or treated coercively, the right to liberty and security, the right to form a family... And in a way, the support provided is fundamental in addressing or facilitating the person's ability or access to the resources to enjoy these other rights."
Xavier Orno, a person with lived experience of mental health issues and a user of Support Girona, also highlighted that "the importance of support for people with disabilities lies in the fact that if their rights are not respected, we are taking away the person's identity, which is what makes us most human."
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