WHO DECIDES AND HOW?

Reviewed by Kathy O’Grady Senior Psychologist

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NAMHI has done it again! They have produced a discussion document that takes on the complex task of decision making and capacity in the field of intellectual disabilities and they have rendered it to us in a discussion document that clearly blows the cobwebs away and de-mystifies this complex area.

The passion for this book comes from NAMHI’s deep concern with inadequacies of Irish law in relation to decision making and the need for further elucidation on the basic human rights of people with intellectual disability to self-determination and self-governance. The document reviews

  • The current law in relation to decision making for people with intellectual disability.
  • It explains how the law is currently inadequate and where change would be helpful, and
  • As a discussion document it promotes debate and dialogue on this important topic.

The book is divided into a number of headings:

  • Approach to Law Reform – NAMHI’s View
  • Legal Capacity
  • Substitute Decision Making
  • Consent to Medical Treatment
  • Sexual Relationships
  • Summary and Recommendations.

The document points out that parents, carers and service providers have no legal authority to make decisions on behalf of adults with intellectual disabilities. This means that there is a limbo-land for carers, in that they are left in the totally unsatisfactory situation that decisions have to be made, but there is nobody who has the authority to make them.

NAMHI’s approach to law reform is that they consider that new legislation needs to be put in place to provide for decision making for adults with intellectual disability. The legislation must respect the human and constitutional rights:

  • facilitating people with intellectual disability to make and use the decision making capacities they have;
  • providing advocacy services to assist in the decision making process;
  • developing a clear / transparent / accessible / non-intimidating process for assessment of a person’s capacity to make decisions;
  • where a person lacks the capacity to make decisions, providing substitute decision-making arrangements that are respectful of the rights of the individual and that facilitate the use of decision making capacities that are present;
  • ensuring safeguards against abuse by substitute decision makers;
  • protecting people with limited decision-making abilities from exploitation and abuse, while facilitating them to live as full a life as possible.

There is a useful example in the section on sexual relationships. The present criminal law makes it an offence to have sexual relationships with people who are ‘mentally impaired’. While this aims to protect people with intellectual disabilities, it is quite restrictive. NAMHI considers that the definition of ‘mentally impaired’ should not include those ‘being incapable of living an independent life’, preferring that the criterion of ‘being incapable of guarding against serious exploitation’ would be better. The general recommendations on capacity should also apply to the capacity to marry.

The above gives a flavour of NAMHI’s approach to the complexities involved in the topic. It is interesting to note that the Commission on Law Reform is very interested in this document. The book is a must for any frontline carers / family members in the field of intellectual disabilities.

WHO DECIDES AND HOW? People with Intellectual Disabilities—Legal Capacity and Decision Making. NAMHI, 5 Fitzwilliam Place, Dublin 2.

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