Articlehybrid2012

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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Disability Rights and Representation Down syndrome and intellectual disability research Healthcare Decision-Making and Restraints

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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References

2007Executive function in education: from theory to practice 2008Mental Capacity Act 2011Embracing the new disability rights paradigm: the importance of the Convention on the Rights of Persons with Disabilities 2001Enhanced self‐determination of adults with intellectual disability as an outcome of moving to community‐based work or living environments 2011Choosing Employment: Factors That Impact Employment Decisions for Individuals With Intellectual Disability 2007Trials and Tribulations of Systematic Reviews and Meta-Analyses 2011Self-Determination across the Life Span: Issues and Gaps 2010Adults With Intellectual and Developmental Disabilities and Participation in Decision Making: Ethical Considerations for Professional–Client Practice

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2019Theorising disability: a practical and representative ontology of learning disability 2018Ensuring human rights for persons with intellectual disabilities?2019Investigating Supported Decision‐Making for Persons With Mild to Moderate Intellectual Disability Using Institutional Ethnography 2019Investigating the Impact of the Living Archives on Eugenics in Western Canada

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