Decision time

by Stephen Kealy

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The theme of Issue 83 is Capacity and Consent—a theme which goes to our essential core as people, our human rights. Those of us who are never or only rarely challenged in respect of capacity or consent, are indeed fortunate. It is likely for some that only when our right to be heard and our capacity are questioned do we become exercised. Able-bodied people do have the ability to seek their rights, but it may not be easy and often seek support from the courts and other statutory bodies.

If you are a vulnerable person, regardless of your level of ability, how do you protect your interests and rights? If you are a person with a disability your right to be heard is often mediated by another and possibly not always on the basis of your actual need. If there were greater clarity around a person’s rights, capacity and ability to give consent would the people employed to look after disabled people be less likely to make decisions on the basis of some ill-conceived expediency? Would a decision, for example, be made to remove a person’s teeth because they had bitten others, rather than engaging the real issue of assisting that person to live a better life by providing appropriate supports, including behavioural and quality of life enhancers? Would there be a greater focus on the strengths and abilities of the person, rather than ensuring that, regardless of their needs, jaded and arthritic routines, designed more to suit carers than the person with an intellectual disabilty, are unecessarliy adhered to?

Regulation is a continuing national theme—or more specifically the absence of regulation. We all have been adversely affected by the absence of regulation, but most particularly those who have led lost lives in our institutions. People have sought their right to be heard, for example, by the Redress Board. The women of the Magdalene Laundries are now also seeking to be heard, and rightly so. What about all those people with intellectual disabilities in inappropriate accommodation, possibly unnecessarily medicated, and their right to be heard? Would some of the decisions made on their behalf ever have been made if there were regulations, linked to standards based on rights, particularly capacity and consent. Maybe some of the decisions would continue to be made, but at least their voice could be heard through an independent advocate.

A better life is possible—not an unreasonable expectation— after all that is what we all want for ourselves and our children. Can such a reasonable expectation ever be realised if there is continuing indifference to people’s rights? Such indifference and lack of outrage must be tackled by addressing standards and regulation. The Minister of State has made some positive signals in this regard, and she does have the ability, and the capacity, to make the decisions. The remaining piece of the jigsaw is the necessary consent of the government to make changes to ensure that people with disabilities can lead fuller lives.

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