Academic journal article Public Health Reviews; Rennes

Individuals with Intellectual Disabilities: A Review of the Literature on Decision-Making since the Convention on the Rights of People with Disabilities (CRPD)

Academic journal article Public Health Reviews; Rennes

Individuals with Intellectual Disabilities: A Review of the Literature on Decision-Making since the Convention on the Rights of People with Disabilities (CRPD)

Article excerpt


Intellectual disability (ID) is characterized by significant limitations in intellectual functioning (i.e., IQ below 75); limitations in adaptive behavior which comprises three skills types (conceptual skills, social skills and practical skills), and it originates before the age of 18.2 Individuals with ID are in need of specialized, integrated treatment3 and are provided for by services within the health, education, and social welfare sectors. According to Article 12 of the United Nations Convention on the Rights of Individuals with Disabilities (CRPD),1 all individuals should have the right to legal capacity.1 In order to exercise this basic human right of autonomy, individuals must be allowed to make their own decisions and communicate these decisions to others. Towards this end, services must employ supported decision-making approaches, which would greatly change the way in which families, professionals, service providers, and the general community perceive and act in reference to persons with ID. The aim of the present review is to map the empirical literature on decision-making among individuals with ID since the CRPD has come into force in 2008 and learn about those areas in need of improvement.


Autonomy refers to an individual's capacity to govern him/herself. In order to exercise informed decisions, individuals must have the relevant information, be able to reflect on their values, desires and goals so as to affirm or disaffirm them, make intentional judgments and decisions based on them, and communicate that selection to others.4 Decision-making is a central element of self-determination, empowerment, and social inclusion for people with disabilities. Accordingly, best-practice approaches to service delivery, such as person-centered planning, place the consumer in the role of the decision-maker regarding what service support and assistance are needed and who is best suited to provide them.5


The basic human right to choice is mandatory according to the CRPD1 which was adopted by the United Nations in 2006 and came into force internationally in 2008.6 To date, 153 nations have signed the Convention and 119 have ratified it. Ratifying nations commit themselves to implement all obligations of the Convention. The CRPD is the first disability-specific international treaty and the first treaty to adopt the human rights approach to disability.7 Specifically, the CRPD promotes freedom of choice and autonomy, non-discrimination, full participation and inclusiveness in society, respect for the differences evident in persons with disabilities, equality of opportunity, accessibility to core social goods and services, and the identification and removal of barriers.

According to Article 12 of the convention, "persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life."1(p.9) The article states the need to "ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances." 1(p.9)

Article 12 stresses the importance of supported decision-making, stating that all "parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity." 1(p.9) As a result of Article 12, substitute/surrogate decision-making models-that is, the process by which decisions are made on behalf of adults who are judged to lack decision-making capacity-should be replaced with supported decision-making models and lead the care of people with ID. However, decision-making is not a simple task, and opportunities for decision-making are not always abundant. This article maps the current decision-making situation four years after the enactment of Article 12 which can be used as a base for comparison in future years. …

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