Ascertaining the views of people with profound and multiple learning disabilities

Abstract

Summary There has been a welcome recent shift towards taking account of the views of those who have traditionally been seen as lacking competence, including those with learning disabilities. Innovative methods have been devised to help people express their views and research demonstrates that people with learning disabilities can be taught this skill. However, none of this work has involved people with profound and multiple learning disabilities and serious doubts have been raised about the extent to which it is possible to ascertain the views of this group. Those operating at a preintentional level may not express, or have, views in the usually understood sense. Methods which attempt to ascertain the views of this group are highly inferential and it is often only possible to infer immediate preferences. It is important that the limitations of such methods are acknowledged. A case study is used to demonstrate that, in relation to major life decisions, taking account of a wide range of assessment information may give a clearer picture of the preferences of someone with profound and multiple learning disabilities than subjective interpretations of their behaviour or proxies. This should be combined with a focus on teaching the person so that they acquire as much control over their own lives as possible.

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