Supported Decision-Making for Persons with Intellectual Disabilities
Research type
Research Study
Full title
Legal capacity and supported decision-making for Adults with mild to moderate intellectual disabilities: Article 12 (Equal recognition before the law) of the United Nations Convention on the Rights of Persons wtih Disabilities (CRPD)
IRAS ID
120871
Contact name
Nandini (N) Devi
Contact email
Sponsor organisation
Department of Health Sciences and Health Policy, University of Lucerne
Research summary
This is a qualitative exploration study, `How are health and social decisions made by persons with mild to moderate intellectual disabilities (ID) and their support worker as it occurs in their everyday lives?`. Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucially important for persons with ID. There is growing controversy concerning the international human rights treaty on disabilities, UN Convention on the Rights of Persons with Disabilities (CRPD) created in 2006, particularly Article 12 (Equal recognition before the law) which secures legal capacity, the recognition of the right to make decisions for themselves. The CRPD is moving away from substituted decision-making (where decisions are made on behalf of someone who lacks capacity towards supported decision-making (where help or support is provided for someone to make their own decisions). Although the CRPD has been ratified by many state parties (UK has ratified the CRPD), the actual implementation of Article 12 is still a major issue. Implementation is particularly challenging, because of the lack of empirical information about supported decision-making and whether substituted decision-making is justifiable in certain situations. If the concept of supported decision-making can be determined and advanced in accordance to Article 12 for persons with ID, this would improve independent decision-making for persons with ID. This will also enable support workers of persons with ID to provide more autonomy for persons with ID to make their own decisions. This study will be conducted in a residential home for person with ID and in shared accommodation for persons with ID in the UK. This study will involve 10 persons with intellectual disabilities, and 15 of their support workers including additional 4 managers from the homes. The participants in this study will be involved in observational studies and in semi-structured interviews, timeframe of 8 months.
REC name
Social Care REC
REC reference
13/IEC08/0016
Date of REC Opinion
17 Mar 2014
REC opinion
Further Information Favourable Opinion