Who Decides & How? People with Intellectual Disabilities - Legal Capacity & Decision Making (2003)

People with intellectual disability do not have clear rights to make decisions. The law on deciding who has decision-making capacity is very inadequate and the arrangements for supported and substitute decision-making are non-existent. This creates major practical difficulties for parents and service providers. In general, in Ireland, an adult is a person who is aged over 18 years. Adults have the right to make decisions about their lives. People with intellectual disabilities have the same rights to self-determination as everyone else. However, they may not have the capacity to make certain decisions.

In practice, decisions are made on behalf of adults with intellectual disability by parents or by service providers. There is no formal system of assessment of the capacity of the person with intellectual disability to make decisions for him/herself (unless there is an application to have the person made a Ward of Court). Parents/carers and service providers effectively make the decisions that are needed. These range from decisions about where a person is to live, what he/she is to wear to decisions about medical treatment and social relationships including intimate relationships. The majority of decisions made are necessary, appropriate and in the best interest of the person but there is always the danger that they may infringe the rights of the person with the disability or may involve abuse, exploitation, or fraud.

Parents and service providers have no legal authority to make such decisions. They are left in a very unsatisfactory situation where decisions have to be made but there is nobody with authority to make them. A person with an intellectual disability may be denied medical treatment, which would be beneficial but is not essential because there is nobody with authority to make a decision. Problems arise in three areas:

Management of everyday life including management of money and property

Consent to medical treatment

Involvement in sexual relationships

If a person does not have the legal capacity to make specific decisions or to make general decisions then some form of assisted or substitute decision-making mechanism is needed. The current Ward of Court System should be abolished, as it does not serve the needs of people with intellectual disabilities. Inclusion Ireland agrees with the broad trust of the Law Reform Commission in its recent paper on Law and the Elderly when it put forward proposals for a new law on capacity, which would establish tribunals to decide on general legal capacity with an appeal to the Circuit Court.

This document is available from Inclusion Ireland at a cost of €10.