ࡱ> ` bjbjss *H{' NNN8HN\N wLOLO(tOtOtOtOtOtOgwiwiwiwiwiwiw$xh{w0XtOtO0X0XwtOtOwrerere0XtOtOgwre0XgwrerekrutO@O 0/LN_+uLutw0wwuL{d{u{u0tORreSUtOtOtOwwejtOtOtOw0X0X0X0X   HN   N    Choice and Empowerment for People with a Learning Disability. A review conducted on behalf of APEMH by John Harris, British Institute of Learning Disabilities. A shorter version of this paper has been accepted for publication by the British Journal of Learning Disabilities. The review is designed to: establish a conceptual framework for examining choice and empowerment by people with a learning disability identify instruments and protocols which have been developed to promote choice and empowerment describe how services evaluate the role played by key-workers and services in promoting choice and empowerment and identify any protocols or diagnostic tools which have been developed consider outstanding issues for research and practice including the development of additional instruments and protocols. Background The European Convention for the protection of Human Rights and Fundamental Freedoms provides a formal code under fifteen headings giving rights to all citizens in the European Union. Although the Convention does not explicitly refer to choice and empowerment the realisation of the these concepts are clearly implied in respect of rights covering liberty and security respect for private and family life and freedom of thought conscience religion and freedom of expression. Similarly, the United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (1993), includes 22 statements giving direction to national governments. Choice and empowerment are not specifically itemised among the 22 target areas, but they are clearly implied under headings such as rehabilitation support services family life and personal integrity. The most direct appeal for services to promote choice and empowerment for people with a learning disability comes not from national and international declarations but from OBriens interpretation of the philosophy of normalisation and social role valorisation. OBrien includes the provision of opportunities to make meaningful choices among the five fundamental accomplishments which high quality services should seek to deliver: competence; community presence; community participation; respect and choice (OBrien 1987) It should be noted that that this review is only concerned with published instruments and protocols designed to promote choice and empowerment. It does not consider broader approaches which have been developed to promote social understanding and increase confidence in social situations among people with a learning disability, for example advocacy groups or assertiveness training. Methodology Information included in this review was collected in three ways: A search of the BILD Current Awareness Service data base An advertisement in the Current Awareness Service Periodical (circulated to 500 subscribers throughout the UK and other countries) An e-mail circular using selected contacts provided by the author(n=34) Empowerment The term empowerment as considerable intuitive appeal in so far as it has connotations with independence and assertiveness. However, it is difficult to define and it embraces numerous ambiguities, for example it refers to both a process and an outcome (Dempsey and Foreman 1997). Baistow (1995) cites the definition offered by Adams 1990 as the process by which individuals, groups and/or communities become able to take control of their circumstances and achieve goals, thereby being able to work towards maximising the quality of their lives (Page 35 in Baistow 1995). The relationship between the individual (psychological) aspects of empowerment and community involvement and participation has received considerable attention in the United States (see Dunst et al below). However, Baistow highlights some of the inconsistencies and contradictions which arise from this conceptualisation. For example, if empowerment is seen as the process by which power is taken away from professionals and given to service users, the reliance upon professionals to create the conditions for empowerment and identify those eligible for empowerment would appear to contradict this intended realignment of power. Similarly, the absence of an agreed operational definition of empowerment means that it is impossible to judge if empowerment practices are in any way effective. A theoretical analysis is offered by Dunst, Trivette and LaPoint (1994) as a precursor to the development of an methodology for empirical investigation. They propose that empowerment is best understood in terms of six inter-related dimensions: philosophy (principles to be followed In service provision) a paradigm (assumptions about the delivery of services) a process (the means by which power is achieved) a partnership (interpersonal collaboration and power sharing) performance (knowledge skills and behaviour) and as perceptions (attributions and beliefs). After reviewing recent literature on empowerment, Dempsey and Foreman (1997) conclude that there are both explicit and implicit similarities between various different definitions and that these can be formalised into seven core components of empowerment: self-efficacy ones belief that a situation may be changed or influenced; participation and collaboration a collaborative relationship between help-seeker and help giver sense of control change is attributed to the actions of the person concerned meeting personal needs the needs and aspirations of the person are addressed in ways which make them more capable and more competent understanding the environment- the person is able to make a critical analysis of the services, structures and sources of (both formal and informal) support in their environment personal action- there are opportunities to express empowerment in different ways access to resources resources might include friends and relatives, community groups and organisations, service supports and self help groups. These authors caution that the most problematic current issue for empowerment theory to deal with is whether empowerment of service users can be influenced by staff practices and service supports. While empowerment is widely regarded as an important outcome for service users, there is little evidence to indicate how, in practical terms, this might be achieved. From a more practical perspective, Dowson, Hersov Hersov and Collins (1998) define empowerment in terms of individuals being enabled to have increased control over ones own life (page 5) and suggest that it involves the following features: having information being listened to getting a response based on what has been said sharing power with others who are appropriate to hold some of the power with the division of power clearly stated, protected and limited. Protocols and instruments to promote empowerment The concept of empowerment is so broad that almost anything which is designed to promote the wellbeing of people with a learning disability might also be considered as leading to greater empowerment. It is, therefore, extremely difficult to establish appropriate criteria for selecting material to be included in this review. In the absence of alternatives, the only criterion employed here is that the title of the publication suggests that it contains information relevant to this topic. None of the materials described below have adopted an explicit model of empowerment against which outcomes could be evaluated. Action for Empowerment ( Dowson, Hersov, Hersov and Collins 1998) aims to provide staff in housing and support agencies for people with learning difficulties or mental health support needs a systematic method for reviewing their policies and practices to assess whether they support the empowerment of service users (page 2). The authors propose a conventional audit methodology which begins by inviting staff at every level in the management hierarchy to review policy and practice with a view to commenting on improvements which they can make themselves and improvements and service shortcoming which require action at a higher organisational level. The main contribution from service users is that they are encouraged to express their views on the services they receive and how this affects their lives. Participation in all aspects of the audit process is not regarded as essential or even particularly helpful. The pack provides: an introduction to empowerment an outline of one approach to carrying out an audit suggestions on the way in which groups of staff can be organised to review policies and practices a set of questions, reflecting a view of empowerment, which staff can use to assess individual policies and practices lists of policies and practices arranged in three categories, to be included in the review. The pack does not include any information regarding systematic evaluation or outcome data. A very different approach is adopted by Malec and Bateson (1994) in their booklet Keys to Independence A Tutor and Student Programme to Empower People with Learning Difficulties. Their aim is to promote empowerment by helping people with severe to moderate learning difficulties learn a range of life skills. They offer a curriculum framework which includes: communication numeracy self-sufficiency social proficiency technology A central theme is the focus on self assessment and the pack includes an illustrated questionnaire designed to help students, with or without support form staff, to identify skills which need to be developed in order to promote independence. Staff are encouraged to use evidence from the student assessment together with the information included in the curriculum framework to create an individual learning programme. This pack provides no information on outcomes and there is no evidence of any form of evaluation. Other books on educational approaches to promote empowerment in its broadest sense include You Choose by Mosley (1994) and Education for Choice and Empowerment by Sutcliffe (1990) Choice At times, choice is used in a way which draws on a tradition of self-determination: at other times, it draws on the very different tradition of the market, which has been a central tenet of political economy from the classical economist Adam Smith to neo-liberal thinkers such as Hayek and Friedman. These two distinct strands are contained indeed concealed within the one concept blurring different and potentially conflicting ethoses within current policy initiatives. At the same time, this juxtaposition succeeds in winning unanimous approval for the idea; the need to promote choice or the right to exercise it being championed by a wide spectrum of political professional and user opinion. In short, fudging the concept appears to be more politically expedient than defining it. (Stalker and Harris 1998) The apparent confusion surrounding choice can be somewhat reduced by setting out the different ways in which the word choice is used: the process by which people come to a conclusion (either singly or together) regarding different courses of action which are perceived to be available. For example Turnbull (1989) outlined six steps in decision making to be followed when families assist adolescents or young adults with intellectual disability to make decisions a performative action which expresses a decision in a social setting (see Austin 1962) For example, Rawlings, Dowse and Shaddock (1995) define choice as a response to a situation, where the response is one of a number of which is possible in that situation (page 138) (for example, he chose the short cut home) the perceived range of available options (for example, at the end of the day the shop had a limited choice of magazines for sale) In this review, the use of the verb form (to choose; make a choice) is used to convey the first of these meanings. The second and third meanings are expressed more explicitly by the phrases communicating a choice and options available to the person choosing. In this context, it is worth emphasising that the significance of choice depends wholly upon the person concerned being aware that: at least two options for action exist that they can influence which option is chosen. Of course many people with a learning disability live in settings where choices are restricted (Kishi et al 1988; Emerson et al 1999). However, to the extent that a person is unaware of the possibilities which are available to them, their choice is further restricted. Limited awareness can occur because of inadequate access to information or because of limited understanding of the information which is available (Nozaki and Mochizuki 1995. People with a learning disability often find it difficult to gain access to information which they can understand. Choice is similarly restricted if a person does not have the means to make a choice (Kennedy and Haring, 1993; Grove, Bunning, Porter and Olsson 1999). This may arise in the case of people with severe communication problems ( Realon, Favell and Lowerre (1990), where people with a learning disability have little experience of choosing, or where they fear intimidation if they make incorrect or unpopular choices. In a variety of social situations, options are available, but choice is restricted by conventions and social expectations. The essence of choice is however a personal awareness of ones own capacity for intentional action (Searle 1983) In much of the professional literature, choice is used to refer to relatively insignificant response options, while decision is commonly applied to choices which are likely to have a greater impact on the persons life. This is an arbitrary, and somewhat subjective, distinction which is not adopted here. Instead, the term choice is used throughout. Different models of choice Jenkinson (1993) draws a useful distinction between normative and descriptive models of choice. The normative approach describes how people make decisions to optimise their goals in idealised situations. The extent to which each option contributes to achieving a goal is referred to as utility . However, there is often a conflict between anticipated utility and the probability of an outcome occurring. This means that making a choice involves balancing predicted utility (if the outcome is achieved) with an estimate of the chances of the goal being achieved. The more likely it is that a particular choice will lead to a particular outcome, the more weight is likely to be assigned to the utility of the option leading to that consequence. In reality, the idealised situation rarely occurs and choices are typically affected by cognitive and social factors such as attention span, anxieties, shifting values and past experience of making choices. Descriptive models of choice are concerned how people choose in real life settings and recognise a range of internal and external influences on choice. Jenkinson draws several important conclusions from previous research on choice making in naturalistic settings. First, people are more likely to be clear about their goals when considering choices related to familiar, relatively simple issues about which they have direct experience or where the issue involves widely accepted non-contentious values, for example cleanliness. Secondly, choice may be viewed as a single issue or as a series of issues to be decided consecutively, with earlier choices having implications for later choices. For example, career decision making typically involves choices about education and employment which lead to increasing specialisation and narrowing options. Thirdly, in ordinary settings past experience of similar situations strongly affects choice making. Fourthly, faced with complex choices, such as where to live or taking a new job, people do not logically analyse each available option in terms of utility and probability of occurrence. Instead they review possible options for favourable outcomes and make a choice as soon as an option is identified which appears to meet an important goal. Fifthly, when the person making the choice does not feel in control of either the available options or the process by which choices are made, reduced motivation in likely to lead to poor choices. The way in which intellectual disability affects a persons ability to make choices depends to a great extent on whether the choice making is regarded as an internal, private mental activity or as a socially mediated process. Each of these two approaches is considered in turn. Capacity to make decisions Choice as an internal mental process is exemplified by the approach taken in the Consent Handbook issued by the American Association on mental Deficiency (Turnbull 1975-76). Informed consent is defined as the opportunity to give personal permission for a procedure, activity or programme that affects ones life. To give informed consent a person must: have appropriate and sufficient information, have the capacity to understand consequences give their consent freely, that is voluntarily. Not surprisingly, many people with intellectual disability are deemed not to have the capacity to give informed consent. Similarly, a recent consultation paper issued by the UK Government (Who Decides 1999) , describes decision-making by vulnerable people, including those with a learning disability, in terms of their mental capacity to make a choice. the first question is whether the person concerned is able to understand and retain the relevant information, including the consequences, not only of deciding one way or another but also of making no decision at all. The second question is whether the disability means that the person concerned is able to use that information in order to arrive at a decision: some people may be unable to exert their will , whether because of delusions or compulsions, or because of susceptibility to influence, or any other reason connected with their disability (Who Decides Lord Chancellors Department 1997 page 12 13) Behind this statement, there are a number of implicit assumptions: first, that choice is a result of individual psychological abilities, variously referred to as able to understand retain information exert their will; secondly, social influences unwanted sources of interference which might bias the persons mental processes; thirdly, the normative model described above is the most appropriate way of conceptualising choice. The concept of capacity referred to in both of these documents draws upon an idealised sequence of mental activities which are presumed to underpin choice making. To have capacity a person must be able to: receive information retain information long enough to recognise that a choice or to decision is needed consider what options for choice/action are available consider the implications of each choice/option consider the implications of not choosing make a decision (mentally) communicate that decision to other people. Unfortunately, this sequence bears little resemblance to the way in which ordinary day to day decisions are made and lacks any empirical support from research. It is particularly unhelpful as a framework for considering choice making by people with a learning disability because it emphasises intellectual capacity and explicitly excludes the role which social and environmental factors make to choice (see Bach and Rock 1996). Notwithstanding the limitations of this approach, it has proved extremely popular and has had a considerable impact on the way in which staff and professionals provide support to people with a learning disability. For example, in the UK people with a learning disability are distinguished in terms of their apparent ability to execute this sequence of internal mental actions. Those who cannot complete the sequence are deemed to be unable to: provide consent to medical treatment participate in court proceedings own property. consent to sexual relationships. Social and environmental influences on choice In formal settings, such as a court or a meeting with a hospital consultant, considerable emphasis is placed upon choice as the outcome of individual psychological processes summarised above. A corollary of this assumption is that effective choice by the person concerned should exclude the influence of other people. While it might seem reasonable to protect people from undue influence by those with an obvious conflict of interest, this seldom straightforward in practice. From a socio-cultural perspective, choice can only be properly understood as a product of social practices which derive their meaning from shared meanings and expectations (Grove et al 1999). Previous research has indicated a number of factors which can exercise both positive and negative influences of choice making by people with intellectual disabilities and these are summarised within three broad categories by Jenkinson (1993): environmental factors including constraints arising from group living, service structures, and resource limitations; staff behaviour such as instructing or prompting service users, helping service users identify the consequences of choices and over-ruling choices if is seemed likely that negative consequences would occur; service user factors such as limited experience of making choices and failure to master relevant skills. Each of these potential areas of influence will be considered in turn. Environmental influences Very little research has been carried out on the way in which the environmental factors listed by Stancliffe affect choice by people with intellectual disabilities. However, from her review of research on non-disabled people, Jenkinson suggests that choice is only meaningful when there are at least two available alternatives each of which would meet at least one of the persons goals. If one option is vastly superior to the other, or conversely, if neither alternative is perceived as desirable, the person is unlikely to experience choice. Where there are a number of attractive options to choose from, people perceive themselves to have greater scope for choice and self determination. These conclusions have obvious and important implications for people with intellectual disabilities. On the other hand, if people fail to perceive any relationship between their actions and the things which happen in their lives, they may develop a generalised belief that they are powerless to affect outcomes in any situation. They are likely to become increasingly passive and unwilling to participate in making choices. Such situations occur when the environment is not structured to promote choice making or when insufficient effort has been made to make people with intellectual disabilities aware that a choice is available. Unacceptability, uncertainty and ambiguity among options also deter people from making decisions as do choice situations where there may be adverse consequences. A third consideration in respect of environmental factors concerns the way In which opportunities for decision making are presented. There is a growing body of behavioural research literature which examines the optimal conditions for presenting choice to people with severe and profound learning disability (Lancioni, OReilly and Emerson (1996). This is considered below under within the section on instruments and protocols to promote choice. Staff behaviour and other social influences on choice Following a participant observation study of choice making by four women with intellectual disabilities living in three different residential settings, Rawlings, Dowse and Shaddock (1995) identified three ways in which the social context affect a persons ability to participate effectively in making choices. Experience of choice making Previous experience and the availability and familiarity of choice making options affected peoples ability to make choices. The authors report examples of carers over-ruling initial choices when they thought that the persons choice was based upon inadequate experience of a particular option (e.g going to the cinema). After repeated visits to the cinema, initial protests changed to smiles and laughter indicating that she did not want to leave the cinema at the end of the film. Another woman recognised her own lack of experience in particular settings (for example, a visit to the doctor) and relied upon support from friends. The authors conclude that services should endeavour to provide people with intellectual disabilities with a range of experiences relevant to making choices and the time to explore and understand different options. They should also provide opportunities for people to exercise choice. Supporters Friends, family and carers can both increase and restrict a persons ability to make choices. For example, responding to choices made by a person with an intellectual disability may be inconvenient if it disrupts planned activities or established routines. Supporters may also exert more subtle influences, the way in which problems are defined, questions are phrased, perspectives posed and integrated, and confidence shown .in the persons ability to draw inferences , will all influence a persons decision (Jenkinson 1993). Jenkinson also notes that perceived social pressures can make the decision-maker highly resistant to a change of mind once a decision has been made and results in elevated levels of stress. Among the positive strategies which supporters can use to promote choice, Rawlings et al refer to: using a pause to indicate that a choice is available making choices explicit using verbal explanation recording choices made developing rostas showing whose turn it is to choose encouraging people to ask for help with choice making when they need it . Routines A routine implies a relatively fixed sequence of events or activities which may be imposed by an organisation such as a group home for people with intellectual disabilities or developed voluntarily as a convenient way of organising ones own behaviour. Rawlings et al suggest that most routines have the potential to reduce opportunities for people to exercise choice. However, routines can be useful in so far as they establish a predictable set of events with responses cued by a consistent set of contextual cues. These authors argue that services should build refusal into routines and allocate specific times for making choices. Supporters should reassure service users that refusal to follow a routine is their right and that if they make this choice they will not be penalised with adverse consequences. Characteristics of service users and their influence on choice On the basis of the little research evidence available (unpublished papers by Jenkinson and Nelms 1993; and Tymchuk et al 1992) Jenkinson (1993) concludes that if usual criteria of choice making are applied, people with an intellectual disability experience greater difficulty than people without a disability. This is partly attributable to their cognitive deficits which impact upon information processing skills and partly to limited experience (see above) and poor communication skills. Rawlings et al point out that if the expression of choice cannot be clearly understood by others choice making will be limited and Guess et al (1985) stressed the importance of staff sensitivity and responsiveness to body movements, facial expression and gesture where these may be expressions of preference by people with severe communication difficulties. Equally important are the disadvantages imposed by poor communication in gaining information about choice and utilising the experience of other people to explore choice options. Thirdly, people with poor communication skills are likely to experience difficulty in seeking help from other people when confronted with difficult or complex choices ( Rawlings et al 1995). Friends and carers clearly have an important role to play in recognising and interpreting choice by people with limited communication skills. However, this is far from straightforward and errors of over and under interpretation can have serious adverse consequences (Grove et al 1999) Houghton et al reported very low response rate by staff to expressions of choice by students with severe intellectual disabilities and Stancliffe ( 1991 cited by Jenkinson) found that staff attributed a higher level of choice to residents than residents perceived themselves to have. What makes some choices more important than others? It is proposed that the importance of any choice is influenced by four factors: whether or not it can be reversed and how easy or difficult this might be its likely impact on valued aspects of a persons life the duration of the likely consequences its impact on the range of valued choices which will subsequently be available Reversibility Many choices can be (and often are) quickly and easily reversed. For example, ordering tea and changing to coffee, deciding to get up and then staying in bed for another hour. Choices which can easily be reversed are not usually regarded as highly significant for the simple reason that any negative consequences can be attenuated by revoking the decision. For example, if you choose an unappetising sandwich at lunchtime, it is easy to select another one. If the TV programme you are watching turns out to be disappointing you can select another channel or turn the TV off and do something else. More important choices tend to be less easily reversed, for example, buying a house or a car, choosing a holiday, getting married, changing your job, consenting to medical treatment. These decisions are irreversible or, more accurately, only reversible at great personal and financial cost. Of course, there are some irreversible choices which would probably not be regarded as important, for example, buying a lottery ticket, choosing a particular train (which gets delayed) or taking a day off work for gardening (just when the weather takes a turn for the worse). Although they are irreversible, the consequences of these choices are either short term or do not affect valued aspects of peoples lives. Impact on valued aspects of peoples lives Research on quality of life suggests that it is possible to identify domains of experience which are more or less important and there is considerable individual variation across individuals in respect of the relative importance of each domain (Perry and Felce 1996) For example, some people place a high value on expendable income, and will work long hours to achieve this, while others are more concerned with free time for leisure, and prefer to spend less time working. The choice about the balance between work and leisure is influenced by the relative importance attributed to this particular domain. Duration of consequences. Other things being equal, choices which lead to longer lasting consequences are regarded as more important than choices which have short term or transitory consequences. For example, I will think more carefully about watching a TV programme which lasts two hours compared to one which last only 30 minutes. I will think more carefully about going t o a meeting which last all day compared to one which lasts only a couple of hours. Impact on the range of choices which will subsequently be available. Often one choice has implications for other choices which will subsequently be available (Jenkinson 1993; Rawlings et al 1995). For example, a holiday destination is more or less attractive because of the other choices which become available once you have arrived. Conversely, any choice which involves spending significant amounts of money is likely to restrict some of the choices (those which also involve spending money) available in the future. The greater the impact of the choice on the availability of other choices in the future the more important that choice. These four dimensions provide a descriptive framework which could be used to establish a better understanding of choice. For example, by establishing their predictive power for identifying choices which are rated as more or less important to help staff and professionals determine the support which should be made available to people with a learning disability making choices to help people with a learning disability explore the nature and implications of choices for people with intellectual disabilities. Instruments for Measuring Choice The quantification of choice is based upon two assumptions: first that it is easier for people with intellectual disability to participate in making choices in some settings/situations rather than others secondly, that individuals will vary with respect to both the number and the types of setting in which are able to make choices. The normative model referred to above assumes that, in any given situation, a person will either be able to carry out the sequence of mental activities required for choice-making, or they will not. However, from a socio-cultural perspective, choice making cannot be conceptualised simply as within-subject variable which is either present (person is able to make a choice) or absent (person is not able to make a choice ). At the very least, measurement will need to be located within a theoretical framework which recognises the interaction of the persons abilities (which in turn reflect communication skills and experience of choice making) with the opportunities which are made available with the environment ( including the availability of information, the existence of routines, social expectations and the support available from friends and supporters). In many settings choice will be influenced by factors which can be easily observed and recorded (se for example Rawlings et al 1995) However, in other situations the influence of social factors may be mediated through mental representations. For example, a person making a decision about what to do after an argument with a friend may remember seeing a soap opera which involved two characters arguing and then making up. To date there is no research to suggest how to quantify social factors which are mediated by mental activity. It is much easier to establish the extent to which tangible social supports are made available to people with a learning disability when they make decisions and, not surprisingly, this has been the focus of what little research has been conducted on this subject. The Resident Choice Assessment Scale This scale measures the of opportunity for choice within a living environment for people with severe handicaps using 25 questions about potential choices. Staff or carers provide information using a seven point Likert-type scale ranging from never to always constructed so that higher scores indicate greater availability of choice. On the basis of a pilot study involving a large medium and small scale (group home) residential settings the authors (Kearney, Durand and Mindell 1995) report good test retest and inter-rater reliability. Construct validity, as measured by the difference in choice scores between small homes and larger facilities, was also satisfactory. Examples of the items used in the Residential Choice Assessment Scale: Does the client choose the time he/she wakes up in the morning Does the client choose his/her bedtime? Does the client choose his/her own clothes in the morning? Does the client have a choice at mealtimes (eg ham Vs steak)? Does the client choose his/her own recreational activities? A Scale to Assess Choice the Choice Questionnaire Stancliffe and Parmenter (1999) also conceptualise choice in terms of the opportunities which are made available to people with intellectual disability to express their own views on outcomes which affect their lives. They recognise that the Choice Questionnaire does not assess a persons capacity to make choice but rather the degree of choice exercised in their particular circumstances. The Choice Questionnaire samples choice-making opportunities in six life domains: domestic matters, co-residents and staff money and spending health social activities, community access and personal relationships work and day activities overall choice. Within each domain questions relating to choice are presented to service users or a staff informant. Responses are rated on a three point scale: the person makes the choice actively, independently and without restrictions all or almost all of the time; the person makes the choice some of the time or usually has help choosing; others decide all or most of the time, or the person is not allowed to make the choice. The scale has good psychometric properties including internal consistency; inter-scorer agreement; test-retest reliability; face validity, concurrent validity (against the Quality of Life Questionnaire Shalock and Keith 1993) and construct validity as reflected in its predictive powers in relation to people living in different styles of residential accommodation - people living semi-independently achieve higher scores on the Choice Questionnaire (i.e. they experience greater choice) compared to people living in group homes. Interestingly, these authors equate the absence of social supports in choice making as evidence of independence and empowerment. An alternative interpretation is that non-disabled people draw upon extensive social resources although these may not always be visible at the point where the choice is expressed. This creates the impression that choices are being made without access to social supports. The aim of intervention to assist choice making and empowerment for people with a learning disability might be to determine the most helpful forms of social support. Examples of items from the Choice Questionnaire Who decides when you go t o bed? Who decides which jobs you do around the house? When you buy clothes, who chooses which clothes you buy? Do you take exercise or play sport? Who decides that? (Does anyone make you do exercise or sport?) Who decides what you do in your spare time (when you are not working or at day activities)? The Consent Screening Interview The Consent Screening Interview is described by Lindsey (1994) as tool to provide information about the ability of consumers with mental retardation to consent for community residential placement. The Interview comprises three sections covering information, voluntariness and capacity and questions are designed to be presented directly to the person with intellectual disability. The validity of the instrument was measured by comparing data from three groups: persons with a legal guardian; persons without guardians and people whose parents or guardian had retained control over their consenting power without any legal test being applied. The results indicated no difference in the score obtained by participants with guardians and those without guardians, although there was a significant difference in the scores from participants without guardians and those whose parents had retained power of consent. With these ambiguous results it is unclear how effective this instrument might be I n assessing a persons ability to consent. A further limitation is the absence of a complete version of the interview in the paper which reports these results. Protocols and instruments to promote choice People with severe and profound learning disability. In a review of choice research on people with severe and profound learning disability, Lancioni, OReilly and Emerson (1996) consider studies concerned with building choice opportunities in daily contexts. Two main contexts are considered, regular meals and snack/leisure situations (six studies reviewed) and occupational settings (four studies reviewed). Typically, the methodology involved creating alternatives using items ordinarily available in that setting, for example food or drinks at a meal time or two objects representing two different activities. Participants were initially presented with two alternatives and invited to select one; if no selection was made after a fixed interval, verbal encouragement was offered. The outcome following a selection was a reinforcing activity, for example, the edible item was included as part of the lunch or snack or the person was able to engage in the activity indicated by the chosen object. The procedure was then repeated. Pre and post intervention comparisons indicated that this approach increased the choice opportunities made available to the participants in these settings. Other studies show that choice making can be improved for people with severe and profound learning disabilities by re-structuring the environment to emphasise the options available, highlighting the functional relationship between a choice and its consequences (Cooper and Browder 1998) and by enhancing their capacity to signal choice ( Browder, Cooper and Lim 1998). Lancioni et al (1996) conclude that people with severe and profound learning disability can make choices and that in many cases intervention only approximate interventions are needed. However, there are no published guidelines indicating how to organise this type of intervention. Promoting Good Practice on Choice The Guidelines for Good Practice on Choice by the North West Regional Advisory Group on Learning disability Services (UK) are designed to be used by workers in services, family members, friends and other community members outside paid services. Following a preliminary discussion of underlying issues such as power, wants and choices and risk, the guide offers practical advice organised under 15 broad headings together with examples from practice. A selection of these headings is listed below. All concerned commit themselves to learning to listen to people so as to discover their wishes, dreams, aspirations, preferences and choices In arriving at any decision it helps if it is based on adequate information. Where it is very difficult to determine a persons preferences others will need to act in the best interest of the person ( Interestingly, there is no discussion of what is meant by best interest) Where there is a conflict between encouraging choice and another equally valid principle there is a need to explore a variety of approaches to resolution. Although they should not be imposed upon people with learning disabilities, staff are entitled t o their own moral values. This document provides no information on how the guidance was developed or evidence to support its efficacy in promoting good practice. Significant life choices When friends, family and supporters seek to involve people with severe and profound learning disability in making complex choices (for example, whether or not consent to medical treatment), an important issue concerns the ability of the person concerned to communicate their preferences unambiguously. The key issue is the validity of an interpretation (about choice) when there is no way of resolving ambiguity by asking the person concerned what they meant (page 192). Grove et al suggest that the answer to this dilemma, is not to seek a hidden meaning but to work with the person to construct shared meaning. In terms of choice, the goal is not to work out what choices the person has already made, but to provide them with the social resources they need to make a choice. The See What I Mean protocol has been designed to provide guidelines to help supporters engage people with severe and profound learning disability in making significant choices and to record the nature of the support provided. It therefore goes some way towards to the goal identified by Bach and Rock (1996) of ensuring that the decision-making process proceeds according to the wishes of the individual. The process involves 5 stages: Information gathering Discussion with the person concerned Summarising the results of the discussion Checking different interpretations Reaching a decision and forms are provided as a detailed guide to each stage and to assist record keeping. Staff and supporters are encouraged to consider background information such as the persons level of understanding in everyday situations and the resources they need to communicate (signs, pictures etc). They are also expected to document the help provided during discussion sessions about the choice to be made, and the evidence available to support the outcome. SWIM has been piloted with 18 professionals working in 13 different settings. However, no information is provided regarding whether the SWIM procedure resulted in better involvement of people with a learning disability in choice making or whether choices were made which more accurately reflected the wishes of the people concerned. Consent to Medical Treatment Wong, Clare, Holland, Watson and Gunn (2000) used an experimental design to asses the impact of presenting information in different ways on the choice making abilities of people with a learning disability. As part of a procedure to obtain consent to a simple blood test, three groups of participants (with mental illness; learning disability and dementia) were interviewed and provided with information on the procedure which included: the purpose of the test the nature of the procedure the risks of having the test the risks of not having the test voluntariness ( the principle of free choice in making a decision about the procedure) They received information in a four stage sequence: uninterrupted disclose (UD) participants were asked to follow a printed sheet while all the information about the test was read aloud. They were then asked to provide an account of the information in their own words. elemental disclosure (ED)The task was broken down into smaller components and participants were asked to provide an account in their own words of each section of the information sheet recognition participants were asked to identify each of a series of statements as the same as or different from the information on the sheet. Non-verbal demonstration participants were asked to show the procedure of the blood test using materials chosen from a selection that included irrelevant distractor items. The information sheet included five distinct pieces of information and responses on each of these were scored as totally acceptable (relevant and factually correct) partially acceptable or unacceptable. As expected, the procedure showed that people with a learning disability had greater difficulty understanding the information needed to give informed consent than people in the population at large. There was also a clear trend in terms of the kind of information which was more or less easy to understand from procedure, which was the easiest, to purpose, voluntariness, risk of procedure and finally, risk of saying no, which was most difficult to understand, Finally, the ability of people with a learning disability to give informed consent improved as the task was simplified. The authors conclude that the results argue against the use of the normative model of decision making and the classification of people in terms of their capacity to consent. The study also provides a paradigm for supporting people with a learning disability in formal choice-making settings. Choosing Staff The pack by Townsley, Howarth LeGrys and Macadam (1997) is designed to help staff, supporters and trainers involve people with learning disabilities in choosing staff. The pack is divided into three sections: the first describes how to get started and includes an overview of the recruitment process, the importance of training, how to involve trades unions and other aspects of networking; section two describes activities which can be used to promote discussion and for training; and section three lists resources and further reading. The pack is based on the outcomes of research to find out the extent to which people with a learning disability are involved in staff recruitment and selection in residential and day care services and to evaluate the outcomes for staff, candidates seeking appointments and people with a learning disability. No information is available regarding outcomes for services using this pack. The choices being promoted can be ranked against the four criteria whether or not it can be reversed - not easily reversed its likely impact on valued aspects of a persons life - high the duration of the likely consequences long term its impact on the range of valued choices which will subsequently be available- significant Involvement in Research Bach and Rock (1996) argue that the use of substituted decision making for people who do not meet the criteria for capacity contravenes UN Charter on Human Right. In their work on promoting user involvement in research, they have developed an alternative approach called supported decision making which explicitly recognises that choices are made within a social context. The failure to recognise support provided by people in whom the individual has confidence constitutes a failure to respect the will and preferences of the individual (page 6) Rather than seeking a methodology to sharpen the distinction between competent and non-competent people, the focus on the development of a process which will ensure that decisions are made according to wishes and will of the individual. The process is guided by an unpublished protocol which sets out the following stages: a member of staff is designated to approach the person with a learning disability and talk about the research; they ask if the person would like a family member, friend or other trusted person to be present; if those who know the person well think he or she will have difficulty making am informed decision about whether or not to participate a family member of advocate is invited to help; the person with an intellectual disability and their supporter review information about the proposed research and together decide whether or not the person will consent to participate; a letter which formally invites participation in the research and explains in plain language what is involved is sent to the person and reviewed with their supporter; an overview of the research is provided and reviewed with the person with the intellectual disability together with an explanation of how information will be used and what steps will be taken to protect confidentiality; the supporter discusses the project with the person with intellectual disability and explains what it means to sign the information release and confidentiality form. The report by Bach and Rock provides no information regarding the efficacy of this approach. However, it is difficult to assess the significance of choosing to participate in a research project without more information on the particular constraints imposed on participants by the research methodology. Choosing where to live Choosing Your New Home is designed t o be used by staff and supporters wishing to help people with a learning disability make choices when moving to a new home. The supporter is required to collect preliminary information about accommodation which may be suitable before using a set of prepared cue cards to explore the persons preferences. The cue cards describe over 50 features of a home which might be important to a person with an intellectual disability based upon the Life Experiences Checklist (Ager 1990 and 1998). Examples include feeling safe in my own home having my own door keys having the choice of living with a steady partner. On the reverse side of each preference card there are written cues to help the person explore how far particular homes match their preferences. These include things to look for (See how people get in and out of the house. Do they have to ring the bell or have they got a key?) and things to ask (Will I have a key to the front door? Can I come home late at night? Will the door be bolted?). When visiting possible places to live the person with an intellectual disability is encouraged to record (with help if necessary) responses using sheets provided with the pack. The pack invites the supporter to help the person review the places he or she has visited and place them in order of priority based upon their preferences. A visit is then arranged to the house or apartment which most closely matches the persons preferences. The pack includes additional cards with prompt questions for these familiarisation visits and a suggestion that the person stays in the accommodation for a trial period before making a final decision. Clearly choosing a new home is an important decision which rates highly on all four criteria: whether or not it can be reversed and how easy or difficult this might be its likely impact on valued aspects of a persons life the duration of the likely consequences its impact on the range of valued choices which will subsequently be available However, Choosing Your New Home has not been systematically evaluated and the pack does not include any outcome data. Summary of Choice Making Protocols and Criteria for Importance of Choice reversibilityimpact on lifedurationimpact on other choicesSignificant choices (SWIM)++++Consent to blood test+---Choosing staff-+++Involvement in research-++-Choosing where to love++++ Summary 1. Choice and empowerment are terms with a wide currency in respect of services for people with intellectual disabilities but there is notable absence of consensus with respect to definitions and theoretical frameworks. 2. While there is a body of research which has sought to establish a conceptual framework for empowerment, this is complex and, perhaps for this reason, has rarely been used as a starting point for empirical research or service development work in learning disability services. The term empowerment should therefore be interpreted with considerable caution. 3. There is no evidence to support the claims of publications included in this review which are designed to promote empowerment. 4. Choice is also a term which requires further conceptual clarification if researchers and service providers are serious about its significance as a measure of quality of life for people with intellectual disabilities. 5. Choice is most frequently used to describe the mental processes by which people recognise options and determine their preferred course of action. 6. The normative model of choice assumes an ideal situation which is seldom, if ever realised in real life settings. A descriptive approach has made some progress in identifying a wide range of social and environmental factors which influence choice. 7. While choice is essentially a mental activity, choices are invariably made within a setting or context. The context may have a direct impact on choice making or it may be mediated by mental representations of one form or another. 8. Rather than seeking to establish how people with a learning disability make choices when the context is reduced to a minimum (the consent model widely adopted in the UK and the USA), research indicates the need for a greater understanding of how social and other supports can assist people with intellectual disabilities to participate in making choices. 9. Support for choice should presumably be focussed on choices which are important rather than those which are trivial (two obvious exceptions to this general principle concern people who have had little or nor previous experience of making choices and those who receive intensive therapy to promote communication). However, there is little or no research to indicate what makes some choices more important than others. The following criteria are proposed as a basis for further research: whether or not it can be reversed and how easy or difficult this might be its likely impact on valued aspects of a persons life the duration of the likely consequences its impact on the range of valued choices which will subsequently be available 10. There are few instruments for measuring choice. The Choice Questionnaire (Stancliffe and Parmenter 1999) is a new instrument which shows considerable promise. However, it is important that any data generated is interpreted within the constraints of its conceptual framework and methodology. 11. There are relatively few protocols or other instruments for promoting choice although those that have been published cover important areas such as moving home, choosing staff and giving consent to medical treatment. 12.None of the protocols and instruments for promoting choice reviewed in this paper have been subjected to systematic evaluation regarding the quality of the choices which are finally made. The extent to which any of these tools can make a difference to the involvement of people with intellectual in choice making or affect the quality of the choice made is uncertain. References Ager,A. (1990) The Life Experiences Checklist, Windsor:NFER-Nelson Ager,A. (1998) The BILD Life Experiences Checklist (2nd edn) Kidderminster:BILD Publications. Baistow, K. (1995) Liberation or regulation? Some paradoxes of empowerment, Critical Social Policy, 42, 34-46. Bewley,C. (1998) Choice and Control: Decision-Making and People with Learning Difficulties, London: Values Into Action. Browder,D. Cooper, K., and Lim,L. (1998) Teaching adults with severe disabilities to express their choice of setting for leisure activities, Education and Training in Mental Retardation and Developmental Disabilities, 33, 3, 228- 238 Cooper,K., and Browder, D. (1998) Enhancing choicer and particpation for adults with severe disabilities in community-based instruction, Journal of the Association for Persons with Severe Handicaps, 23, 3, 252-260 Dempsey I and Foreman P (1997) Toward a clarification of empowerment as an outcome of disability service provision, Journal of Intellectual Disability Research, 44, 4, 287- 303. Dunst,C. Trivette,C. and LaPointe (1994) Meaning and key characteristics of empowerment, in C. Dunst, C. Trivette and A. Deal (eds.) Supporting and Strengthening Families: Methods, Strategies and Practices, Cambriidge,MA: Brookline Emerson,E. Robertson, J. Gregory,N. Hatton,C. Kessissoglou,S. Hallam,A. Knapp,M. Jarbrink,K. Netten,A. and Noonan-Walsh,P. (1999) Quality and Costs of Residential Supports for People with Learning Disabilities, Manchester: Hester Adrian Research Centre. Felce,D. (1999) Enhancing the quality of life of people receiving residential support, British Journal of Learning Disabilities, 27, 1, 4-9. Grove,N. Bunning,K Porter, J and olsson,C. (1999) See what I mean: interpreting the meaning of commuication by people with sever and profoudn intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, 12, 3, 190-203. Guess,D. Benson,H and Siegel-Causey,E. (1985) Concepts and issues relarted to choice-making and autonomy among persons with severe disabilities, Journal of the Association for Persons with Severe Handicaps, 10, 79-86. Houghton,J. Bronicki, G. and Guess,D. (1987) Opportunities to express preferences and make choices among students with severe disabilities in classroom settings, Journal of the Association of Persons with Severe Handicaps, 12, 18-27. Jenkinson, J. (1993) Who shall decide? The relevance of theory and research to decision-making by people with intellectual disability, Disability, Handicap and Society, 8, 4, 361-375. Kennedy,C. and Haring,T. (1993) Teaching choice making during social interactions to students with profound multiple disabilities, Journal of Applied Behaviour Analysis, 26, 63-76. Kishi, G. Teelucksing, B. Zollers, N. Parke-Lee, S. and Meyer, L. (1988) Daily decision making in community residences: a social comparison of adults with and without mental retardation, American Journal on Mental Retardation, 92, 5, 430-435. Lancioni,G. OReilly,M and Emerson,E. ( 1996) A review of choice research with people with severe and profound developmental disabilities, Research in Developmental Disabilities, 17, 5, 391-411 Lord Chancellors Department (1997) Who Decides: Making Decisions on Behalf of Mentally Incapacitated Adults, London : The Stationery Office. Nozaki,K and Mochizuki,A. (1995) Assessing choice making of a person with a profound disabilities: a preliminary analysis, Journal of Association of Persons with Severe Handicaps, 20, 3, 196-201 OBrien, J. (1987) A guide to personal futures planning, in G. Bellamy and B. Willcox (eds) A Comprehensive Guide to the Activities Catalogue: An Alternative Curriculum for Youth and Adults with Severe Disabilities. Baltimore:Paul H Brooks Rawlings,M. Dowse,L and Shaddock,A. ( 1995) Increasing the involvement of people with an intellectual disability in choice making situations: A practical approach, International Journal of Disability, Development and Education, 42, 2, 137-153. Realon,E. Favell, E. and Lowerre, A (1990) The effects of making choices on engagement levels wit h persons who are profoundly mutliply handicapped, Education and Training in Mental Retardation, 25,299-305 Stalker, K. and Harris,P. (1998) The exercise of choice by adults with intellectual disabilities: a literature review, Journal of Applied Research in Intellectual Disabilities, 11,1, 60-76 Searle,J. (1983) Intentionality: An Essay on the Philosophy of Mind, Cambridge: Cambridge University Press Townsley,R. and Macadam,M. (1996) Choosing Staff:Involving People with Learning Difficulties in Staff Recruitment, University of Bristol: Policy Press. Turnbull,H. Turnbull, A Bronick, G. Summers,J. and Roeder-Gordon,C. (1989) Disability and the Family: A Guide to Decisions for adulthood, Baltimore:Paul H Brookes. Turnbull H. (ed) (1975- 1976) Consent Handbook, Washington D.C. American Association on Mental Deficiency (No 3) Wehmeyer,M. (1998) Self determination and Individuals with significant disabilities: examining meanings and interpretations, Journal of the Association for Persons with Severe Handicaps, 23, 1, 5-16. Instruments which have been developed to promote choice (to be reviewed) Bach,M. and Rock, M. (1996) Seeking Consent to Participate in Research from People Whose Ability to Make an Informed Decision Could be Questioned: The Supported Decision-Making Model, The Roeher Institute, Ontario, Canada. Browder,D.M. Cooper,K.J. and Lim,L (1998) Teaching adults with severe disabilities to express their choice of settings for leisure activities, Education and Training in Mental Retardation and Developmental Disabilities33,3, 228-238. Cooper,J.K. and Browder, D.M. (1998) Enhancing choice and participation for adults with severe disabilities in community-based instruction, Journal of the Association for Persons with severe Handicaps, 23,3, 252-260 Dowson,S. Hersov,E, Hersov,J. and Collins,J (1998) Action Empowerment: A Method of Self-Audit for Services t o People with Learning Disabilities or Mental Health Support Needs, Traford: National Tenants Resource Centre. Grove,N (forthcoming) See What I Mean Kidderminster:BILD Publications. (A protocol to assist staff and carers in making judgements about the wishes and aspirations of people with profound a learning disabilities who are faced with significant life decisions. Kearney, C., Durand, M., and Mindell,J. (1995) Choice assessment in residential settings, Journal of Developmental and Physical Disabilities, 7, 3, 203-213 Kroese,B. (1998) Choosing Your New Home. Kidderminster :BILD Publications Lindsey,P. 1996) The right to choose: informed consent in the lives of adults with mental retardation and developmental disabilities, Education and Training in Mental Retardation and Developmental Disabilities, 31,3,171-176 Malec, J. and Bateson,J. (1994) Keys to Independence: A Tutor and Student Programme to Empower People with Learning Difficulties, Essex: Longman. Mosley,J. (1994) You Choose: A Handbook for Staff Working with People who have Learning Disabilities to promote Self-Esteem and Self Advocacy, Wisbech: LDA. North West Regional Training Group on Learning Disabilities (1995) Choice: Guidelines for Good Practice, Calderstones NHS Trust. Stancliffe,R.J. and Parmenter, T.R. (1999) The Choice Questionnaire: A scale to assess choices exercised by adults with intellectual disability, Journal of Intellectual Disability Research, 24, 2, 107-132 Sutcliffe, J. (1990) Adults with Learning Difficulties: Education for Choice and Empowerment, Leicester: NIACE/Open University Townsley,R, Howarth,J. LeGrys,P and Macadam,M (1997) Getting Involved in Choosing Staff: A Resource Pack for Staff Supporters and Trainers Working with People with Learning Difficulties. Brighton: Pavilion. 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