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

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Abstract

To achieve the basic human right of autonomy, individuals, including those with intellectual disabilities (ID), must be able to practice decision-making, that is, to make their own decisions and communicate these decisions to others. In support of autonomous decision-making, Article 12 of the United Nations Convention on the Rights of People with Disabilities (CRPD) stresses the right of individuals with disabilities to legal capacity on an equal basis with others.1Supported decision-making approaches may aid individuals with ID in achieving this right. The question remains whether the enactment of the CRPD indeed is translated into opportunities for autonomous and supported decision-making among individuals with ID. In order to examine this question, a systematic review of bibliographic databases since 2008, when the CRPD came into force, was conducted in order to map the current state of decision-making among individuals with ID, and to identify areas in need of improvement. Twenty-seven manuscripts were reviewed, most focusing on decision-making within the fields of residential settings, health care, and sexuality-related decisions. This review showed that difficulties in decision-making in the area of ID remain during the early years after the CRPD entered into effect. These difficulties are related to the individuals with ID themselves, to their caregivers, and to the service system. No working models on supported decision-making for this population were found. The discussion highlights the importance of developing decision-making skills among people with ID, allowing them opportunities for decision-making, training professionals in supported decision-making, and fostering the philosophy of person-centered planning.

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Correspondence to Shirli Werner PhD.

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Keywords

  • Intellectual disability
  • systematic review
  • decision-making
  • autonomy
  • human rights