Ascertaining the views of people with profound and multiple learning disabilities

Abstract

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.

Parents' accounts: Factors considered when deciding how far to involve their son/daughter with learning disabilities in choice-making

“…Whilst some parents did feel their son/daughter's level of understanding largely precluded them from choice-making, others felt that level of understanding should not automatically exclude their child (see also Murphy et al, 2011). Other factors were identified as having a role to play including the complexity of a choice (a factor also identified by Ware, 2004); the perceived risks; and the opportunity to experience options. The importance of people with learning disabilities accessing experiential information is similarly recognised in past literature (Cannella et al, 2005;Guess et al, 2008).…”

“…Preferences are presented as expressing a subjective like/dislike of a particular thing which the individual already has some prior experience (for example, preferred foods, activities, people). In contrast, choicemaking is a process in which options or alternatives are identified, weighed up and a selection made (Kearney & McKnight, 1997;Ware, 2004;Smyth & Bell, 2006). Choice-making is therefore a cognitively more complex and demanding activity.…”

“…decisions (Jenkinson, 1993;Kearney & McKnight, 1997;Ware, 2004;Smyth & Bell, 2006;Guess et al, 2008).…”

“…At the same time, choices vary from simple to complex according to the demand made on an individual's cognitive processing skills and abilities. For example, making choices about the future requires the ability to anticipate events and weigh-up potential consequences (Ware, 2004).…”

Una experiencia de innovación colaborativa en tecnología centrada en la persona: la detección emocional y sus posibles contribuciones al apoyo de personas con discapacidad intelectual y del desarrollo

“…En estos casos, se suelen utilizar escalas objetivas o, como alternativa, se suele preguntar a sus personas próximas ("proxys") con los problemas de fiabilidad que ello puede conllevar, según ha demostrado las investigaciones efectuadas (Ware, 2004;Goode y Hogg, 1994;Verdugo et al, 2009;Vos et al, 2010Vos et al, , 2012Vos et al, , 2013.…”