Supported decision-making for people with intellectual disability: A review of the literature

Article 12 in the United Nations Convention on the Rights of Persons with Disabilities (CRPD) mandates that people with disabilities shall receive the support necessary to enable them to express wishes and needs, as well as to make independent decisions. Norwegian legislation does not use the term ‘supported decision making’, but within current health- and social care legislation some laws may be interpreted as establishing rights to supported decision making. Although the term ‘supported decision making’ has been discussed and applied for years in countries such as the United States, Ireland, Canada and Australia, it has only recently gained attention in Norway.

The term ‘supported decision making’ refers to any process that empowers a person to make their own decisions and/or express their wishes and needs. The person providing the support must be able to describe the circumstances of a choice in such a way that enables the supported person, as far as possible, to understand what the choice entails. This may require that care providers clarify the consequences of each alternative and supports the person to express a choice. Supported decision making can cover formal processes related to applications or rulings, as well as everyday choices concerning meals, companionship, and activities. The crucial issue is that the person who is being supported remains at the centre of the decision process, and that his or her expressed choice is central to the outcome.

In research on how people with disabilities themselves assess the support they receive, special emphasis is placed on the relationship with the person delivering support, and the value of taking time – i.e., not only being given sufficient support and information during the decision-making process but also sufficient time to decide. Those supported describe that they appreciate practical support, help to develop their knowledge and skills, as well as emotional support, such as someone to talk to. The person providing support and the person receiving support may have different perceptions on supported decision making. Actions that care providers intend as guidance or suggestions may be perceived by the supported person as though at decision is being made for them. At the same time, we are witnessing a new generation of persons with disabilities with changing expectations regarding self-determination. These persons challenge traditional ideologies and the ways in which health care services are organised today.

Literature shows that specific conditions within the care environment are essential in order to promote supported decision making. Such conditions include safety, predictability, familiarity, good relations and competent care providers. Care providers must understand the challenges that the individual person with disabilities faces. They need to be familiar with human rights, alternative methods of communication, have knowledge about the system that makes it possible to realise the person’s decisions, and be able to analyse and assess which considerations are at stake in a specific situation.

This review of the literature finds that persons with disabilities are often supported in their everyday decisions. However, they may experience less support and fewer choices related to education, employment, where to live, and who to live with. Care providers attitudes and actions may be essential to enhancing the person’s decision-making capability and supporting decisions. Studies show that though care providers attitudes may differ, they are generally more concerned with supported decision making and self-determination now than previously. Services that are characterised by standardised solutions may limit the individual’s freedom of action in everyday life. There is a need for systems that provide both the person with disability and care providers room for choice and action.

This review gives an overview of what environmental factors and competencies that are necessary to facilitate supported decision making. It also offers a scientific framework for decision-making processes. Applying it may enable persons with disabilities who need supported decision making to participate in the process to the greatest extent possible and enhance care staffs’ ability to facilitate such processes.