Having little or no choice is demeaning and has a negative impact on an Individual's Quality of Life. In this blog, we are going to explore Choice as a Voice providing an alternative to behaviours others find challenging.
The ability to express and exercise choice and control in one’s environment represent one of the most relevant domains of quality of life alongside with other constructs: such as physical, material, social and emotional well-being (Felce & Perry, 1995). Research has consistently reported that individuals with disabilities are offered few opportunities to be make choices and express preferences across their daily lives.
Research tells us that Choice is an important factor in Quality of Life (QoL):
"Being able to make choices, as well as taking advantage of opportunities to make choices, is an integral part of what makes humans able to function independently within the community." DesStafford (2005, pg. 12)
“People with learning difficulties should be enabled to make informed choices and take reasonable risks." (Sutcliffe 1990 page 3)
"Self advocacy should be a key component of learning, underpinning the development of a curriculum built on student choice, decision-making and empowerment." (Sutcliffe 1990 page 19)
"Learning should offer maximum opportunities for students to plan for themselves and to make choices and decisions." (Sutcliffe 1990 page 21)
"It was a common experience for people living in hospital to suffer physical and verbal abuse, be denied choices and rights, and have few educational, social or employment opportunities. Those people who lived in the community fared little better.They too had restricted choices, went to institutionalised day centres and had limited opportunities for employment and education." (Virginia Moffat 1996 page 13)
"Even in supposedly enlightened community care settings, I have often seen situations where supporters control, intimidate and restrict choices." (Virginia Moffat 1996 page 14)
"Developing the pupils ability to make choices is an important extension of the capacity for enjoyment. It is a vital achievement on the pathway of achieving autonomy." (Coupe-O'Kane, Porter & Taylor 1994)
“People with intellectual disability, however, attached greater importance to all aspects of their lives than did people without a disability. This may be linked to their aspirations, preferences, and opportunities for choice, which may, therefore, be a more meaningful way of considering their life quality." (Hensel 2000 page 35)
"We believe that everyone should be able to make choices. This includes people with severe and profound learning disabilities who, with the right help and support, can make important choices and express preferences about their day to day lives." (Valuing people, Department of Health 2001, Page 24)
"One of the most important things that practitioners can do in their work is to respect the choices that people with disabilities make from the options that are available to them." (Brown and Brown 2003 Page 222)
"Choice continues to be a major concern for those responsible for service provision to people with learning disabilities and it is one of the cornerstones of Valuing People (Department of Health, 2001). While initial assumptions and instincts might lead one to think otherwise, a substantial body of research suggests that many people with PMLD are able to make choices reliably." (Carnaby 2004 page 8)
"One of the most basic building blocks leading to enhanced self-determination is the ability to make informed choices for opportunities within one’s daily life. Considering the skills involved in becoming self-determined, choice making is one of the first and most basic skills to develop and build upon." (Wolf, J., & Joannou, K. 2012)
Choice is important for every person on this planet. It directly equates to an Individual’s QoL. Why then, for Individuals Experiencing Learning Difficulties (IELD) is choice often severely restricted?
While it might be argued that this issue is a problem that was related to the past, a recent report (Bradshaw, J. Beadle-Brown, J., Beecham J., Mansell, J., Baumker, T., Leigh, J., Whelton, R., & Richardson, L. 2013) showed that (page 25) on average people with an Intellectual Disability:
were engaged in activity for less than half the time (44%);
had little contact from staff for around 75% of the time;
received direct assistance to partake in activities for only 6% of the time;
typically had little support for choice with 22% getting what they considered to be good support in this area.
As can be seen, the provision of choice is an on-going area of concern.
Lancioni, O’Reilly, & Emerson, (1996) showed that individuals with profound developmental disabilities can make choices and Browder, Cooper, & Lim (1998) showed that supporting staff are able to learn to provide more choice within the daily routine. The benefits of such increase in the level of choice provision include:
an increase in the dignity of the individual Learner (Perske 1972);
a reduction in behaviours that staff may find challenging (Dyer, Dunlap, & Winterling, 1990; Carr & Carlson, 1993; Lindauer, Deleon, & Fisher 1999, Lohrmann-O’Rourke & Yurman, 2001);
"The results of this experiment add to the literature by providing direct evidence that choice making can produce reductions in specific, objectively measured problem behaviors." (Dyer, Dunlap, & Winterling, 1990 page 519)
"Over the last two decades, an increasing number of authors have advocated for providing individuals with disabilities the right to make choices. The majority of discussions focused on the importance of choice-making opportunities to the overall quality of life for persons with disabilities (see Bannerman, Sheldon, Sherman, & Harchik, 1990, for a discussion). For example, choice can be seen as a means of incorporating the preferences of individuals into their daily home, school, and work environments. Choice also allows clinicians to identify and use the most potent reinforcers, thus enhancing learning and performance. Research has demonstrated that choice may be associated with increases in appropriate behavior, improvements in task performance, and decreases in problem behavior (see Kern et al., 1998, for a review). Furthermore, the right to make choices allows for a more normalized lifestyle and thus should be a goal of all who serve individuals with disabilities." (Vorndran 2005)
"The main findings in these studies were that choice interventions led to decreases in inappropriate behavior and increases in appropriate behavior, and that various preference assessments could be used to identify reinforcing stimuli." (Cannella, O’Reilly, & Lancioni 2005)
an improved staff awareness of preferences of individual Learners (Browder et al; 1998);
a continuing increase in number of choice opportunities offered by staff (Cooper and Browder (2001);
an increase in the the engagement of the Learner in the task (Dunlap et al., 1994, Cole & Levinson, 2002);
the development of early communication skills (Stephenson & Linfoot, 1995);
an increase in spontaneous speech production where physically possible (Dyer, 1987);
an improvement in student performance on curricular materials and interventions (Cole & Levinson, 2002)
a higher quality of life outcomes (Willis, Grace, & Roy, 2008, Stancliffe et al., 2011);
a higher scores on quality of life indicators (Neely-Barnes, Marcenko, & Weber, 2008);
an increase in social interaction with general education peers (Kennedy & Haring, 1993).
Thus, the provision of choice for IELD is, in theory at least, as evidenced by the research, a very good thing to do. However, how we choose to provide choice and what we assume in response to the choices seemingly made by individual Learners can be problematic. What exactly is choice? Is choice a good thing? Can there be too much choice? How should choice be provided? How can you be certain that an Individual has made a choice? These questions are addressed in the text below.
The Model of Choice Diversity (Brown, Belz Corsi & Wenia, 1993) discusses seven categories of choice that are available in any situation. The aim is not offer the individual all seven choices at once. Too much choice can have the opposite effect leaving the individual feeling overwhelmed, stressed and anxious. Hence, it is not merely about providing choice making opportunities but using the different categories to identify opportunities throughout the day for offering meaningful choices to the individual.
To showcase how opportunities can be created below are examples in a classroom setting:
Is too much choice too much of a good thing?
"Sometimes too much choice can be confusing." (Jackson & Jackson 1999 page 81)
While the provision of choice throughout the day is undoubtedly a good thing, too much of anything may itself be problematic. Learners (indeed, any of us) may become overwhelmed or stressed if presented with too much choice at any one time (Baumeister, Bratslavsky, Muraven, & Tice1998; Iyengar & Lepper, 2000; Schwartz, 2000).
Thus, while the ability to make choices during the day should not be restricted, it might be wise not to overburden the Learner with too much choice at any one time. Of course, that assertion itself is problematic! If choice is to be limited at any one time:
who is decide on what options are to be made available?
why did they decide on these?
how are they to decide?
are these decisions, once made, fixed?
what if the Learner does not want any of them?
What is Choice?
While this might, at first glance, seem like a rather strange question to ask at this point in this article, it is more difficult to answer than one might expect. Try to define the word choice without using either any form of the the word 'choice' itself (choose, chosen, choosing, choices ...) or any synonym for the word 'choice' (for example without using word such as: decide, determine which, elect, opt, pick, prefer, select, …). It's not so easy is it? Look up choice or choose within the available web dictionaries and they all fall into this trap of stating that Choice is 'choosing between alternatives', 'the selection between two or more options', 'deciding between presented alternatives'. What we thus have is something of a tautology - choice is choosing!
It's perhaps even more complex when we consider what choice means for those Individuals Experiencing PMLD.
For the present, Bhargava & Jones will define choice as:
"The independent knowledge (understanding, consciousness) that a particular behaviour (action, vocalisation, physical movement, indicating strategy) will lead to (result in, be commensurate with) a specific (desired) result (goal, need fulfillment, attainment) when presented with a set of recognised (known, comprehended), whole (not selecting for a part of or an attribute of), alternatives at a particular point in time."
Here choice is regarded as a specific observable independent behaviour which has a particular consequence in response to a given range of currently available alternate stimuli. The notion of an Individual's consciousness of the behaviour plays an important role in all aspects of this. The Learner has to be conscious of the:
the situation (that a specific action on his/her part will result in one particular response. The other alternative will no longer be available);
his/her behaviour and how it will effect an outcome.
All of this from an individual whose understanding of the world is limited as a result of his/her condition. The Learner therefore has to be conscious of the situation, each of the alternatives, what is being (t)asked of him/her, his/her response strategy, others understanding of his/her response strategy (theory of mind). Is this really feasible from an Individual Experiencing PMLD?
When a staff member states that a particular individual has 'made a choice' are they really implying all of the above? Are they aware of all of the above and does anyone ever ask them to qualify their statement? What they are likely to be stating is that a Learner appeared to indicate (in some manner appropriate to the Learner's physical abilities) an item from a range of other items. However, is this a choice?
Note that the definition makes reference to 'whole' as opposed to 'part of' or 'attribute of'. Imagine a choice of two items being present to a Learner. the Learner is attracted to an attribute of one of the items (colour, luminosity, shape, ...) and therefore looks at it (even Learners registered as 'blind' may be able to 'see' an item if it is illuminated more than another by sunlight for example) and then staff takes this (assuming it) to be a conscious choice made by said individual. Is it a choice? No!
The individual has just responded to a feature of an item in a particular manner (exhibiting a specific behaviour) and the response has been read as a choice by others.
Knowing what choice means (having a definition) is a way of deciding what issues need to be addressed in teaching Learners to make choices. The clearer the definition the clearer the pathway to the goal.
"even children with profound learning difficulties , given suitable conditions provided by modern technology, can make choices; in this case between sounds, voices, and rhymes provided on speakers. Moreover, they show enjoyment while so occupied and are motivated to further choice making. At the beginning of this chapter, the opinion was expressed that every step on the way to having more control over our lives is worth taking. In the case of these children, opportunity to exert control, however limited, appears to be leading to increased motivation and increasing self-regulation." (Beryl Smith 1994 Page 5)
In order to meet this goal, staff within special education should be developing ways in which more and more control can be passed to Learners. Staff should rarely ever be doing it 'for' (there are some exceptions to this rule) and should hardly ever be doing it 'with' (again with some exceptions) but, rather, be facilitating individuals to do it for themselves. The goal of control therefore is one in which choice is not just permitted at certain points at the dictate of others but one which is a fundamental and integral part of the day:
"Our profession has focused on choice-making as a permissible activity, rather than as a teaching target" (Shevin and Klein 1984, page 60)
However, while we may find a philosophical commitment to a particular idea or an approach fairly easy, often it is much more difficult to make that approach a reality. For example, to make any establishment (which caters for people with cognitive and physical disabilities) run smoothly, there has to be some sort of ordering and scheduling to accommodate staff coming and going.
Such scheduling may impact on the ability to offer free choice at all times of the day to every member of that community: Johnny cannot simply go swimming when he wants to because the pragmatics of the situation do not allow it, any more than they allow you to do anything you want when you want to do it (although it would be nice!).
The logical outcome of this apparent dichotomy might be a balance between the demands of the establishment and the needs of the individual for freedom of choice and control. Inflexibility in timetabling and structures lead to a reduction in the opportunities for real choice:
"Inflexible scheduling often precludes opportunities for choice. For instance, clients may not be allowed to choose the order or timing of activities. They may be discouraged from taking breaks or from choosing activities that are not scheduled." (Bannerman, Sheldon, Sherman, & Harchik 1990)
At the same time, complete freedom of choice at all times of the day and night would pose insurmountable problems for those with the duty of care. While a balance must be struck, we must keep in mind that the 'goal is control': not the institutional control of the Learners (leading to passivity and learned helplessness) but the Learners control of their lives and their destinies.
Passivity is commonplace amongst people with a severe communication impairment. In a study by Sweeney (Sweeney L. 1991) 42 out of 50 users of AAC showed some level of learned helplessness when interacting with one or more Significant Others. The more severe the communication impairment the greater the degree of helplessness. It would appear that, the development of an individual’s ability to communicate also effects an improvement in an individual’s desire to act independently.
The factors that are involved in creating an atmosphere that is supportive of communication are also the factors that tend to demand more interactive skills of an individual. The relationship is reciprocal: greater communicative ability may lead to greater independence and greater independence may lead to greater communicative ability. Prevention is better than cure: the role of communication in the avoidance of personal passivity should be stressed:
"Without an effective means of communication during childhood development of autonomy, exploratory/experiential opportunity, and relative strength of self-image/esteem will be compromised." (Sweeney L. 1993)
While it has been shown that the act of providing real time choices helps with the development of early communication skills (Stephenson & Linfoot, 1995), I want to go further and state that 'choice is a voice'. This notion will be developed further in one of the sections to follow. Of course, offering a choice to a Learner does not mean that they are in control:
"Offering someone a choice does not mean that you are relinquishing control to that person. You are teaching independence." (Rowland and Schweigert 2000 Page 15)
Indeed, the majority of choices offered in educational establishments are 'contained' (see next section below); that is the choices offered are decided by another (staff member) and not by the Learner her/himself. However, for me, the goal is eventually to hand over control to the Learner (with staff acting as facilitators) with the provisoes that:
the Learner comprehends the consequences of control and can take responsibility for it;
the choice is safe.
It is always concerning to read articles on Significant Learning Difficulties that state prerequisite factors. Of course, there are certain things that require physical abilities; riding a push bike typically requires the ability to control and to move your legs, for example. Thus, we do accept that for some things there are some prerequisites.
However, for Individuals experiencing PMLD, prerequisites are a barrier to entry to almost every skill; if these Learners have to meet pre-requisites before being taught to make a choice for example, they may never be taught! Staff may just assume that John is not capable because he lacks the necessary prerequisite skills and just choose for him.
"Having a self-concept or a self picture is a pre-requisite for making a choice." (Jackson and Jackson 1999)
While we do not want to devalue the works of the Jacksons and understand the point they are making, we would want to state, once again, that prerequisites can be a barrier to learning: it may only through being given a choice (for example) that a Learner begins to understand what s/he likes.
That is, the practice itself may be a tool (indeed, in some cases, the best tool) by which certain pre-requisite factors can be addressed.
Having made that point, the Jacksons quote above should not be simply dismissed: if the Learner understands his/her needs s/he will be better able to make an informed choice. In their story (see Jackson and Jackson 1999), Danny (one of the characters) knows that he has lots of possessions (they are moving into a new home and deciding who should get each of the rooms) and therefore needs to choose the bigger room in which to fit everything.
However, isn't the way we sometimes learn in life through making ill-informed choices? Had Danny chosen a smaller room because he was attracted to its colour, for example, he would have come to understand the consequences of his decision and learned a lesson. If we try to eliminate every risk then progression may not be possible although, undoubtedly, there may be some risks that are too big.
A Preference for Choice: A Continuum of Consequence
"An important distinction needs to be made between ‘expressing a preference’ and ‘making a choice’. 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, choice making 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. 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)." (Mitchell W. 2012 page 7)
We are not sure that we agree that a preference is not a choice although it is but a matter of semantics. If an individual is stating a preference, s/he is indicating a choice (I prefer Heinz soup) even though another option is what has been actually provided (the Learner was given another brand of soup and communicated a preference for Heinz while consuming the soup provided).
If a Learner was in a conversation with others and someone stated they loved Campbell's soup, the Learner might also indicate his/her preference for Heinz: while nothing is given and, thus, no soup is actually consumed here, there is still some form of choice in the Learner's consciousness – Heinz over Campbell's.
However, Ms. Mitchell is pointing out that there is a continuum concerning the importance of specific choices with some having significantly more impact on the future quality of life of an individual than others ( a choice of future placement vs a choice of what to drink today for example).
While agreeing on that issue, it would be wrong to somehow devalue the notion of 'choosing' what to drink as a mere 'preference' and therefore unimportant (We are certain that this is not what Mitchell is saying: she is simply pointing out some choices have longer term impact and consequences); Learners have to learn to choose and this should begin with arrays of items from the far left of this 'continuum of consequence' (see diagram below); that is, for example, with choosing a drink rather than choosing where to live.
Indeed, for some Learners, quality of life may be determined, in part, by being able to express such simple choices. Furthermore, skills developed in making choices at this level will make it more likely that choice from other parts of the continuum are made with more comprehension.
It is also likely if choice is routine at this 'lower' level, it is less likely to be overlooked when it comes to items from the far right of the continuum.
However, significant others may adopt a varying stance on the involvement of the individual in choices as they move to the right portion of the continuum, assuming a Learner inability to comprehend the complexity, the consequence, or the risks:
"Complexity was also spoken about in terms of its ‘significance’, and this meant the potential consequences or impact of a decision on future well-being. The importance of their child being able to comprehend consequences and, more importantly, being able to understand possible future outcomes was noted by parents of young people with different levels of learning disabilities (both moderate and severe). When parents felt their child did not have the cognitive ability to comprehend the ‘significance’ of a choice, the level of the young people’s involvement in the choice-making process was reduced." (Mitchell 2012 Page 17)
While some choices are obviously more complex, more risky, and have longer term consequences, it should be possible to involve the Learner in the process by making the necessary information available to him/her at an appropriate level:
"Other parents recognised and valued their son/daughter developing choice-making skills. Parents described supporting the acquisition of these skills by, for example (as noted above), simplifying choices and, where possible, providing direct experience of choice options. Parents also acted as information providers, seeking out information and/or interpreting complex information into a more understandable format for their child. Information filtering was here used in a facilitative rather than protective manner." (Mitchell 2012 Page 21)
Typically the continuum of consequence is thus painted as depicted above with an inverse relationship between the significance (and risk) and any Learner involvement (as the significance of the consequences increases so Learner involvement in the choice decreases).
"Too often, families, teachers and other well-intentioned people protect youth with disabilities from making mistakes and avoid discussing the details and potential ramifications of the youth’s disability. Instead, they focus on the positive and steer the youth away from many experiences where there is a potential for failure." (Bremer, Kachgal, & Schoeller 2003)
This is not an ideal state of affairs although it is understandable. However, as has already been shown, it need not be one of selecting different approaches to the involvement of an individual Learner in the choice making process at different points in the continuum but, rather, one of making information and experiences available at an appropriate level so as to:
teach and develop Learner choice making abilities.
"Respecting and understanding choice plays an important role in safeguarding adults. Listening to individuals’ preferences about issues such as where they wish to live and with whom, can help ensure that people with learning disabilities are able to live alongside others with whom they feel comfortable and safe. Thinking carefully and wisely about how individuals make choices and any limitations they may have with regard to choice making and consent, can enable their supporters to ensure that choices are respected, while still taking steps to protect individuals from risks or dangers which they have not appreciated or anticipated." (Department of Social Work, University of Hull 2009)
Thus, a 'better practice' Continuum of Consequence might be more akin the diagram below where Learner training prepares for future need such that the individual may be empowered to take more control over his or her life choices.
It is important that Significant Others:
praise the Learner for making a choice (even if they disagree with it);
give positive feedback on good choice ("That's a great choice John because it will ... well done!")
"Always offer positive feedback when a choice is made. This will help the person making a choice by reinforcing their actions. Example: 'Good . . . that's a good choice." (Jackson and Jackson 1999 page 78)
Provide non-coercive consequential feedback on poor choices ("If that is what you want John OK. If you choose that though it will mean ... It's OK to choose something else if you want to but its also OK to keep that choice. What do you want to do?"). The point here is not to make the Learner change his/her mind and go with what you want but rather to help them think about the consequences of their actions. Sometimes it is only through making a bad choice that we learn what a good choice looks like and thus we should not try to prevent all choices we consider to be poor unless it is threatening to the Learner.
"The long term consequences of a choice made can be understood more fully if you talk it through carefully. Always give time appropriate to the persons's abilities." (Jackson and Jackson 1999 page 78)
Allow Learners the option to change their minds. A change of mind is not unusual, it is something that we all do and therefore should be as acceptable, without criticism, in Learner s too. Of course, it is an undesirable state of affairs, if you have already purchased tickets and booked a journey as a result of a choice made and the Learner then changes his/her mind at the very last minute.
While choice is generally a good thing for staff to be providing for those they facilitate there will inevitably be occasions when they have to say 'no'. This is likely to be experienced by the Significant Others involved with a sense of guilt and or frustration.
"Although most participants felt that choices were on the whole never impossible there were clearly times when they had to say ‘no’. Being unable to provide choices in these instances often left participants feeling both guilty and frustrated." (Bradley 2012)
Unless you are a person with unlimited resources there will be times in your life when you are unable to do something that you desire to do. This probably applies to 99.9 percent of the population. Some will go into debt and cause themselves additional problems in response to such a situation, some will attempt to put off the desire until some future time and work towards making it a reality, and some will understand that this particular desire is but a pipe-dream and get on with their day to day existence.
Learning to live with the practicalities of timetables and resources is a necessary facet of everyone's existence: you cannot simply elect not to turn up for work or for school without some consequence and you cannot simply go out and spend a few million on a country estate if your income does not support such an expenditure. We all have to learn to live with 'no'.
However, we have the benefit of understanding the reasons why 'no' is the outcome, how much more problematic would it be for an individual without the mental capacity to understand such closure of a desired path? As we have seen, it is also problematic for the majority of Significant Others who have to communicate that a particular desire is currently or permanently unavailable.
Why do we have to say no? There are a number of reasons why a Significant Other may have to say no to a person in their care:
lack of resources (availability of necessary staffing, finance, equipment or venue);
too great a risk;
too much of a good thing is likely to be bad for the Learner;
dictate from a superior;
environmental or occupational dictate (for example: timetable states that Learner is required to go to physiotherapy at this time);
against the law;
against the rules of the establishment;
infringes another's rights;
not in the individual's best interest;
Avoidance: Do not provide options within choice arrays when they cannot be immediately provided (because staff are not available for example) if selected;
Bypass: offer up a choice that brings the Learner back on track. For example, if the Learner is due in Physiotherapy and wants to go out to the park (and this cannot be provided) you might offer a choice of routes to get to Physio: Do you want me to come with you and we'll go by the tuck-shop or do you want Doreen to go with you? Bypass can also mean the provision of hopefully attractive alternative options that can be provided at that moment; "We can't do that just now but we can do this or this, which would you like to do?"
Consistency: We all have to learn to live with 'no'; it's a part of life. However, if Significant Others are inconsistent in their approach it is confusing for the Learner. When no is said, it must be meant such that the Learner understand that there is no pint in pursuing the matter further because it will not serve any purpose.
Deferred choice: If the Learner is able to understand explain that the option cannot be provided at this moment in time but you will be able to do it at a future time that you must specify in a manner to which the Learner can relate.
Explain: Set limits in a way the Learner is able to understand for items that cannot be supplied indefinitely (see section below); Explanation also entails using alternatives to the word 'No'. For example, if the Learner wants to go to the park and this cannot be supported because of staff pressures, do not say 'NO'! Rather, explain the situation without the negativity - "Ah, you will need someone to come with you and there may not be anyone who can do that right now. I could take you later today after you have had your lunch. Would you like me to do that?".You may also try to explain using the 'however' approach "We might do that however ..." and then list the issues and consequences of the choice.
Fix a time (or quota or ...): It may be that someone else is using the resource requested by the Learner and thus it is not currently available. The Learner may be able to book a session at a later time (which should be represented in a manner the Learner can comprehend).
Give Alternatives: If possible, provide other options that can be obtained immediately.
Humour: the use of humour is sometimes a way out! "What! Go to the park again? You've been 100 times this week already. I think the ducks know who you are! Wouldn't you like to do X instead? Or, what about Y?”
"Absenting oneself, or refusing to comply with a request, should be recognised as legitimate responses and areas where further learning can take place" (Jackson and Jackson 1999 page 84)
There are two aspects to this section of this article. The first involves teaching the Learner to appreciate it is OK to say 'no' (although, on some occasions, this choice may have to be countermanded) and the second involves Significant Others respecting that right and dealing with a 'no' when it occurs.
In the short story by Herman Melville 'Bartleby the Scrivener' the main character begins to repeat the phrase "I would prefer not to" to every request made of him with eventual disastrous results. While the fictional Bartleby had a perfect right to 'prefer not to do' whatever was requested of him, it is very unusual for any person to behave in this way. However, it is not uncommon for a Learner to indicate a preference not to do something that is being requested by others.
All Learners have a right to say 'no'. The vast majority of Learners do not need to be taught how to communicate a decision not to partake in an activity, they will show it by refusing to cooperate:
"At this point we can see that Matthew has given multiple signs that he does not want to take part in the activity. Apart from his non-standard vocalisation, he has turned his body away from the direction of the scales, looked away, not taken a hand offered to him, and not stepped onto (indeed, edged away from) the scales when they were brought to him." (Finlay. Antaki, & Walton 2008)
In the above, real life example, Matthew refuses to be weighed as a part of the routine of the establishment concerning personal care. The staff recognise that Matthew has clearly refused to partake in the activity and, although, they accept the refusal, they continue to offer Matthew renewed opportunities to partake without becoming angry or apportioning any blame:
"We have also seen that although these behaviours are recognised (indeed explicitly announced) to be refusals, the staff persist in their requests, indicating that Matthew’s refusals are not treated as definitive. Neither Jill nor Sandy, however, are ordering Matthew to get on the scales, or invoking their authority as staff members. They are solving their dilemma (between respect and persistence) by no-blame encouragement – their responses treat Matthew’s refusal as either due to lack of support or encouragement on their part, or due to problems in the way they have issued the invitation." (Finlay. Antaki, & Walton 2008)
It is my experience that this practice is fairly typical of the staff approaches to such situations. Staff generally do not use coercive tactics to force a Learner to participate. Indeed, in the example above, Matthew is not weighed as staff respect his response although they provide him with several opportunities to participate. However, staff can become worried about institutional perceptions of their abilities to 'get the job done': in this instance, a failure to monitor Matthew's weight might cause him some form of harm:
"Refusing staff requests is a test of the staff and the system, as it puts in conflict two opposing institutional objectives: to respect choice and to get the job done. We set out in this article to use video records to examine, for the first time, what happened on two occasions when residents with severe communication difficulties tried to refuse an activity proposed to them by staff." (Finlay. Antaki, & Walton 2008)
In some cases, staff can deflect such a negative response to a situation by proposing a more positive choice of route to the desired goal. For example, if it is known that Chris often refuses to leave class to go to physiotherapy, rather than saying 'It's time for physio now Chris, let's go' (issuing a command), offer a choice:
"Hey Chris, would you like Abby or David to go with you to physio"?
"Oh! And would you like to go via the pond or through reception"?
As can be seen, the choices incorporate the movement to physiotherapy in a positive way as a given. In choosing from the alternatives, Chris is tacitly accepting the movement to physio but controlling some aspects of it (with whom and by what route). While Chris is more likely to respond positively to such an approach, it does not take away his/her right to say 'no'.
Generally, Learners do not refuse to participate in an activity for no reason. It may be a fear of some aspect of the activity for example. While such a fear may seem irrational to others, it must be realised that it is of genuine concern to the Learner. Thus, another strategy for such situations is to try to ascertain what underlies the Learner's concern: work on allaying his/her fears over a period of time to make the experience as enjoyable as possible such that it is something that is not to be missed!
A third strategy is the replacement of the 'done to' methodology with the facilitation of Learner control (the goal is control). That is (and continuing with the above scenario), rather than staff having to weigh every person (done to), they enable each Learner to control as much of the process as possible for themselves.
For example, some stores have an 'I speak your weight' machine which generally is not that expensive. A Learner might find such an experience fun especially if the accompanying staff model the behaviour in a really positive way by getting on the scales and being weighed themselves.
At no point should the Learner be coerced into such practice but choose to do so because s/he sees that others are having fun with it and is simply offered the opportunity to feed in the money and have a go.
In order to provide an opportunity for a Learner to say 'no', a further strategy that might be employed is to ask a closed question before moving to a choice continuum. For example, staff may ask, "Do you want a drink?" (CLOSED QUESTION) (Note: a closed question is one that can be answered by either a 'yes' or a 'no' response). This practice allows the Learner to state 'no' clearly. However, if the Learner responds in the affirmative then staff can ask "What do you want to drink?" and proceed to simplify the process by offering alternatives. There are at least two problems with this approach:
It's too complex for an Individual Experiencing PMLD who is just starting out on developing an awareness of choice;
Research shows that there is a statistically significant likelihood that Individuals with Learning Difficulties will answer 'Yes' to all closed questions. While, in the example cited, this may not be too much of an issue there will be other cases in which it might play a vital role and therefore staff need to be aware.
What about the promise of a reward for participation? While, undoubtedly, this may result in the Learner participating in the activity it is not a recommended practice.
It may lead to the Learner always requiring a reward to perform the activity and not viewing the activity as worthwhile in it's own right. If a reward is to be given, it should not be used to coax the Learner to participate but after participation has taken place, in the form of praise, to say well done and increase the Learner's esteem for having been involved.
Any other tangible reward (such as candies or sweets, etc) should be reduced over time such that the Learner does not become dependent on them to perform the action.
Choice is a voice
While it has been shown that the act of providing real time choices helps with the development of early communication skills (Stephenson & Linfoot, 1995), I want to go further and state that 'choice is a voice'. Thus we must not just:
teach Learners how to make choices;
provide choice as commonplace in the routine;
Important though these things undoubtedly are, we must empower the Learner such that s/he understands s/he has a choice: not one decided from without, imposed by another and restricted (Contained Choice) but one that provides self determination for the Learner, one that the Learner chooses (Complete Choice) - choice as a right and choice as her/his voice - choice as a voice!
In conclusion, the ability to make choices impacts our quality of life, and allows us to be independent and make sure our voice is heard. Ensure real choice plays a major role in the Learner’s day.
About the writers:
Dolly Bhargava, is a Speech Pathologist with a Masters in Special Education. Through the National Disability Insurance Scheme (NDIS) she works as a Behaviour Support Practioner and Speech Pathologist. Over the last 21 years, she has been working with children, adolescents and adults with complex social, emotional and behavioural difficulties (EBD) in a variety of settings such as early childhood, schools, accommodation, post school options, employment and corrective services. Dolly is the founder of Behaviour Help (www.behaviourhelp.com). Behaviour Help consultancy, training and resources (apps, books) aim to educate, equip and enable individuals with EBD with the necessary skills to help them learn positive ways of behaving and managing their emotions.
Tony Jones is a teacher with a Masters in Special Education with over forty years experience. Although currently retired, he still maintains his website talksense.weebly.com a not –for-profit, ad-free, guide to Special Education with a particular focus on communication and Profound Learning Difficulties. In 2020, Tony had a stroke which put him in hospital for several weeks resulting in severe disability. Being a Person Of Disability with impaired speech now has given Tony an unique and fresh perspective with an insider’s insight into communication and disability. Tony has worked across the world in countries from America to Taiwan. He has experience with children, adolescents and adults with a variety of special need requirements. He has lectured to parents, teachers and therapists. His work has gained national recognition including the outright winner of the National Training Agency’s Innovation award for the UK and the first Makaton Centre Of Excellence Award for a UK college. He is the author of several communication programs.
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