WHO DECIDES AND HOW?

Reviewed by Glynis Murphy, President of IASSID, Professor of Clinical Psychology and Learning Disabilities, Tizard Centre, University of Kent, UK.

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This little booklet has been written by Inclusion Ireland, as guidance on the complex issue of capacity to make decisions, for parents and families of people with intellectual disabilities.

In Ireland, as in many Western countries, people have the right to make their own decisions once they reach adulthood. On the other hand, children are not considered able to decide for themselves, at least when young, and their parents have the right to make decisions for them. Countries differ on the age at which children become able to make some of their own decisions, but in Ireland once children are 16 years old they can consent to medical treatments for themselves (but can be over-ruled by parents if they refuse treatment).

Recently, a number of countries have realised they have no provision (or that they have unsatisfactory provision) for what to do when a person has such severe intellectual disabilities that he or she is unable to make his/her own decisions on reaching adulthood. In the past many countries simply considered people with intellectual disabilities unable to decide for themselves on anything, so that others (parents, doctors) made decisions for them—a diagnostic approach to capacity, in the sense that their diagnosis was held to mean that they were unable to decide for themselves. Mass sterilisation in the USA and Scandinavia, and mass institutionalisation in many other countries, proceeded under this assumption.

Nowadays we are more aware of the rights of people with intellectual disabilities. We recognise that there may be many decisions they can make for themselves. Most countries have now adopted a functional approach to capacity, i.e. for each person and each decision, the question is asked, can this person understand the information needed for making this decision, can they weigh up the information and can they make a choice? If so, they are considered to have the capacity to decide and are deemed capable of making that decision for themselves. Many countries also uphold people’s rights to make unwise decisions, as long as they have capacity to do so.

The problem may remain, however—what to do for people who do not have the capacity to make their own decisions. In the UK this has been hotly debated over the last ten years and more, leading to the Adults with Incapacity Act in Scotland in 2000 (the first Act passed by the Scottish parliament) and the Mental Capacity Act 2005 in England and Wales. Currently in Ireland, according to this booklet, a functional approach to capacity has been adopted, so that each person and each decision has to be examined in its own right. Moreover, in making decisions for those who cannot consent for themselves, ‘a wide-ranging consultation involving parents/guardians and appropriate carers should occur.’ However, it is unclear what would happen if parents and doctors disagreed about the decision to be made (although a second opinion would be sought, this might not resolve the matter). There are some exceptions to this ‘wide-ranging consultation’ rule, in that if the person is a Ward of Court, the President of the High Court can make the decision, and if the person has made an enduring power of attorney the attorney can make the decision (most people with intellectual disabilities for whom this is an issue, however, would not have made an enduring power of attorney, as they would not have had the capacity to do so in the first place). In any case, in Ireland, enduring powers of attorney do not extend to healthcare decisions (they can only make decisions about financial affairs, personal care and rehabilitation).

So it seems that in Ireland, at the moment, there is no really satisfactory way to make decisions for those adults who cannot decide for themselves. A new Mental Capacity and Guardianship Bill, designed to improve matters, was introduced to the Irish Senate in 2007. However, it was not passed because of a general election being called. Ireland is now preparing to bring in a Mental Capacity Act instead. According to this booklet, the plan is likely to replace the system of wards of court with a system of guardianship.

For parents and families of people with intellectual disabilities, this is a complex area of law and policy. It pays to get to grips with it, however, if people with intellectual disabilities are to be helped to make as many of their own decisions as they can. This little booklet will assist parents and families to support them to do so, and to know what to do when their family members do not have the capacity to make their own decisions. Further guidance will certainly be needed as time goes on.

WHO DECIDES AND HOW? available from Inclusion Ireland, Unit C2, The Steelworks, Foley Street, Dublin 1, tel: 01-8859891.

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