Rethinking Early Childhood Intervention Services .
Rethinking early childhoodintervention services:Implications for policy and practiceTimMooreMurdochChildrens Research Institute andThe Royal Children’s Hospital Centre for Community Child HealthPauline McGregor Memorial Addresspresented at the 10th Biennial National Conference ofEarly Childhood Intervention Australia, and the1st Asia-Pacific Early Childhood Intervention Conference.Perth, Western Australia, 9th August 2012Murdoch Childrens Research Instituteand The Royal Children’s Hospital Centre for Community Child Health
ABSTRACTDrawing on a recent major literature review of early childhood intervention services,this paper examines the aims and rationale for early childhood intervention services,and what is known about effective practice. Based on an understanding of howchildren (including children with disabilities) learn, the aim of early childhoodintervention (and indeed of all child rearing) is to ensure that children withdevelopmental disabilities gain the functional skills they need to participatemeaningfully in their daily environments. Meaningful participation is the engine ofdevelopment and the key to attaining a true sense of belonging and a satisfactoryquality of life.The implications of this reconceptualisation of the aims of early childhoodintervention services for policy and practice are then considered. The policyimplications explored include the question of the compatibility of prevalent fundingmodels in Australia and elsewhere with this new understanding of the aims of earlychildhood intervention. The practice implications include how to build the capacity ofchildren, families, and mainstream early childhood services, as well as those of earlychildhood intervention services themselves.The ideas discussed in this presentation also have implications for our wider society.First, they suggest that we need to go beyond traditional notions of disability andthink in terms of the full diversity of human ability. Second, we also need to gobeyond traditional notions of inclusion, and think in terms of creating environmentsthat are able to cater for the individual and collective needs of all children andfamilies. Third, we need to go beyond ideas of remediation and rehabilitation, andthink instead of building people’s capabilities. Ultimately, the goals of early childhoodintervention can only be fully achieved through such changes in societal thinking andvalues.CitationMoore, T.G. (2012). Rethinking early childhood intervention services: Implications forpolicy and practice. Pauline McGregor Memorial Address presented at the 10thBiennial National Conference of Early Childhood Intervention Australia, and the 1stAsia-Pacific Early Childhood Intervention Conference, Perth, Western Australia, 9thAugust.
INTRODUCTIONThis is the fourth of the Pauline McGregor Memorial Addresses (Johnston, 2006;Moore, 2008; Forster, 2010), and the second that I have the honour to present.Following the lead of Christine Johnston in the first of the addresses (Johnston,2006), we have been using these opportunities to reflect upon early childhoodintervention and its relationship with other services, particularly mainstream services.In the process, we have also reflected upon the needs of children withdevelopmental disabilities and their families, and what their place in the world is,grappling with (and seeking to go beyond) issues of inclusion.One of the great pleasures of being involved in a national association such as EarlyChildhood Intervention Australia has been the forming of friendships with interstatecolleagues in our collective endeavours to further the cause of early childhoodintervention services and the children and families they support. Nothing would giveme greater pleasure than to have Pauline McGregor still with us on our journey,contributing with her characteristically forthright but good-humoured views.OUTLINEThis paper draws on a recent major literature review of early childhood intervention(ECI) services (Moore, 2011), and on work done subsequently to extend the findingsof that review. (A number of colleagues contributed to this work, and their names arelisted at the end of the paper). We begin with a brief summary of the key ways inwhich children develop and learn, and examine whether children with developmentaldisabilities develop and learn in the same ways as other children. Next, we explorethe vital question of outcomes – what goals we are seeking for children, and whetherthe goals we seek for children with developmental disabilities are any different fromthose we want for all our children,This sets the scene for the main body of the paper which examines the aims andrationale for ECI services, and the role of ECI service providers in working withchildren with developmental disabilities, their families and communities, and the earlychildhood services they attend. Following this analysis, the paper explores some ofthe implications of this reconceptualisation for practice, for policy, and for our societyas a whole, before drawing some final conclusions.HOW CHILDREN WITH AND WITHOUT DISABILITIES DEVELOPAND LEARNIn thinking about children with disabilities, we should always start from what we knowabout children in general. Thus, in considering how children with disabilities developand learn, we should start by reviewing what we know about how children in generaldevelop and learn, then explore in what ways the development and learning ofchildren with developmental disabilities differ from these patterns. Also, inconsidering the needs of children with developmental disabilities, we should begin byreminding ourselves of the needs of children in general, and ask in what ways (ifany) these differ for children with developmental disabilities.
Support for this approach comes from psychiatrist Jordan Smoller in his recent bookThe Other Side of Normal (2012). He challenges psychiatry’s focus on extremebehavioral abnormalities, which has resulted in a system of classification anddiagnosis (the DSM) based on constellations of symptoms. Smoller argues that,without knowing how the brain and mind develop and function, it is impossible toevaluate the validity of these categories of symptoms. He suggests a radicallydifferent approach. Rather than seeking to understand the normal by studying theabnormal, he proposes that‘ the best way to study the abnormal is to study the normal. Rather thansimply starting at the edges and working our way back, our goal should be toilluminate the full and vast distribution of the normal. As we fill out the centre,we can see the connections to the extremes – how and where the functions ofthe mind can be perturbed or disrupted.’ (p. 335)Because of the rapid advances in our knowledge of child development and of thegenetic and neurological bases of development, we are in a much stronger positionto adopt such an approach than before.How children in general develop and learnWhat, then, do we know about how children in general develop and learn, and theconditions they need to do so? Of the vast amount of knowledge that we haveaccumulated, we will focus on two key themes only – the importance of earlylearning environments and role of relationships.Early learning environmentsLearning starts from birth (Shonkoff & Phillips, 2000), and skills developcumulatively, so that those acquired early form the basis for later skilldevelopment (Cunha et al., 2006).Thus, the skills children develop in the early years contribute to a chain ofeffects that either reinforces and amplifies their initial skills and dispositions,or exacerbate initial difficulties and even produces new ones (Rigney, 2010;Stipek, 2001, 2005; The Marmot Review, 2010).Children need multiple opportunities to practice functional skills in everydayenvironments.Because children’s learning is cumulative, early functioning is predictive oflater functioning - however, behaviour and functioning at any point in time arealso more strongly influenced by the immediate social and physicalenvironment than by past experience (Feinstein & Bynner, 2004; Lewis, 1997,2005. Macmillan et al., 2004; van IJzendoorn & Juffer, 2006).The apparent contradiction between these two findings can be resolved byrecognising that, for a variety of reasons, children’s environments tend not tochange: the balance of risk and protective factors is more likely to remain thesame than to change significantly (Sameroff et al., 1993).
While this is not a problem if these environments are positive and stimulating,prolonged exposure to adverse environments can have adverse long-termeffects upon children’s development and learning (Anda et al., 2006).To promote children’s learning and development, therefore, we need toensure that their environments and experiences are optimally nurturing. AsBiglan (2012) notes,‘Biological, behavioral, etiological, and intervention evidence converges ona fairly simple and straightforward principle: If we want to prevent multipleproblems and increase the prevalence of young people who developsuccessfully, we must increase the prevalence of nurturing environments.’Role of relationshipsIn young children particularly, the key environments are relational: childrenlearn through relationships (National Scientific Council on the DevelopingChild, 2004a; Richter, 2004; Siegel, 2012) - infants and toddlers are hardwired to use adults’ brains to form their own (Siegel, 2012)Relationships change brains neurologically and neurochemically, and thesechanges may be for the better or for the worse (Cozolino, 2006).The brain can change its structure and function in significant ways – itpossesses a degree of neuroplasticity that is much greater than previouslyrecognized (Doidge, 2007; Begley, 2009; Davidson & Begley, 2012). Thesechanges come about in two ways - through experiences (external input) andthrough our own thoughts and intentions (internal input)(Davidson & Begley,2012; Siegel, 2012). However, young children have not yet developed thecapacity to modify their own behavior and brain structure through thoughtsand intentions – that’s one of the things they have to learn from adults – soare much more shaped by the external environmental experiences, especiallytheir relationships with caregivers, than are older children and adults.Sensitive and responsive care giving and positive attachments with caregiversare essential for the healthy neurophysiological, physical and psychologicaldevelopment of a child (National Scientific Council on the Developing Child,2004a, 2004b, 2008; Richter, 2004). Positive attachments are grounded inattunement and responsiveness.Caregiving that is inadequate and negligent and attachments that are weak ordisrupted result in adverse consequences for the child's survival, health anddevelopment (Anda et al., 2006; McCrory et al., 2010; National ScientificCouncil on the Developing Child, 2005, 2008, 2010; Richter, 2004)Nurturant caregiver-child relationships have universal features acrosscultures, regardless of differences in specific child care practices (Richter,2004).
How children with disabilities develop and learnDo all these findings apply to children with disabilities? Do they learn in the sameways as other children? Are relationships just as important for them? The shortanswer to all those questions is Yes (King et al., 2002; Moore, 2009; Warren &Brady, 2007).In a recent analysis of the importance for development of relationships andattachments, Moore (2009) explored the evidence that these are just as important forchildren with disabilities as they are for all other children. He summarised theevidence thus:The nature and quality of their key relationships are critical for children’sdevelopment, and the key features of these relationships – particularlyattunement / engagement and responsiveness – are especially important forearly childhood development and the establishment of secure attachment.These same general features of development and learning apply to childrenwith disabilities and to those without. However, while children with disabilitieshave the same developmental needs as other children, they may havedifficulty having these realised because of the nature of their disabilities.For many children with disabilities, the neurological structures on whichrelationships are based are intact and they are therefore subject to the samepositive and negative possibilities as other children. If warm and responsivecaregiving is provided, then positive attachments will develop, forming asecure basis for future learning and development. If the child does not receivesuch caregiving, then their learning and development may be compromised.Children with disabilities often initiate interactions less frequently and givecues that are more subtle and difficult to read. Some parents and caregiverstend to compensate by becoming more directive in their interactions. Othersdevelop compensatory or therapeutic parenting techniques that evoke apositive emotional climate in the relationship, until their children becomepositively emotionally responsive to them.An important goal of intervention is to help caregivers to become goodobservers of children so that they can recognise their cues and respondcontingently, and thereby build secure attachments. (Moore, 2009)The implication of this evidence is that supporting parents and caregivers indeveloping positive and responsive relationships with children with developmentaldisabilities from as early an age as possible should be a major focus of earlychildhood intervention services. There is good evidence that parents, even thosewith challenging or unresponsive children, can be taught to be highly responsive inways that enhance their child’s development (Warren & Brady, 2007). All thoseinvolved in working with young children with disabilities – parents, caregivers, earlychildhood interventionists – should seek to establish relationships with these childrenthat reflect the key qualities of effective relationships. It is the combined effect ofsuch relationships that will ensure the effectiveness of interventions (Moore, 2009).
We have established that children with developmental disabilities develop and learnin the same basic ways as other children. The next question to be addressed is whatoutcomes we want for our children, and whether the outcomes we want for childrenwith developmental disabilities are the same as those we want for all children.OUTCOMES FOR CHILDREN WITH DEVELOPMENTAL DISABILITIESAll effective endeavours are based on a clear understanding of the outcomes thatare being sought. Without such an understanding, one’s efforts are less focused andless effective (Friedman, 2005; Hogan & Murphey, 2002). This is true of endeavourssuch as early childhood intervention: unless we can be clear about what outcomeswe are trying to achieve for children with developmental disabilities and theirfamilies, then our efforts to help them be diffuse and unfocused, and therefore lessconsistently effective (Bailey et al., 2006; Dunst & Bruder, 2002).In considering what outcomes we want, we need to recognise that the choice ofoutcomes is always based on values, whether they are the values of the individual,the family or the wider society. Although our choices may be informed by evidence orresearch, in the end we do not base our decisions solely or primarily on these.Instead, what we want for our children is based on what outcomes – behaviours,achievements, states of being – we value above others.Just as we should base our understanding of the needs of children withdevelopmental disabilities on those of all children, so we should base our goals andoutcomes for children with developmental disabilities on those we hold for allchildren. We will begin therefore by considering some of the emerging thinking aboutoutcomes for children in general.Our ideas and values often change over time, as a result of variety of factors –changes in social conditions, new evidence or understanding of child development,shifts in societal thinking etc. For instance, there have been an ongoing evolution ofideas about concepts such as well-being (Ben-Arieh, 2010), quality of life (Samuel etal., 2012), and disability (Bach, 2007; Turnbull & Turnbull, 2003; Odom et al., 2007;WHO, 2001, 2002).One such change has been in thinking about the outcomes we want for children.These are increasingly being formulated in terms of developing capabilities (ratherthan ‘reaching potential’), meaningful participation (as opposed to social exclusion ormarginalisation), and quality of life. Each of these concepts will now be examined inturn.Developing capabilitiesOne common way of thinking about outcomes for children is that we want all childrento ‘reach their potential’. There a number of problems with this formulation. Who cansay what any child’s potential is (so that we will know when they have reached it)?Potential for what? Are all potentials (potential accomplishments or learnings)equally valuable? Who determines which potentials we should be encouraging – thechild, the family, the wider society, or all of them?
A more helpful way of thinking about the outcomes that we want for children is thatwe want them to have the functional capabilities to participate meaningfully in allaspects of their lives. This notion of functional capabilities is similar to theCapabilities Approach championed by the economist and Nobel Prize laureateAmartya Sen (1985, 2005) and the philosopher Martha Nussbaum (2011) (see alsoClark, 2005; Robeyns, 2005). For Sen (1985), ‘The primary feature of well-being canbe seen in terms of how a person can ‘function’, taking that term in a broad sense.’(p. 197). Similarly, in Sen (2005), he defines capability as ‘the opportunity to achievevaluable combinations of human functionings — what a person is able to do or be’.In her account of this approach, Nussbaum (2011) say it is based on a very simplequestion: What are people actually able to do and to be? What real opportunities areavailable to them? She sees the answer to these questions in terms of capabilities,which are freedoms or opportunities to choose and to act. Capabilities are ‘not justabilities residing inside a person, but also the freedoms or opportunities created by acombination of personal abilities and the political, social and economic environment.‘(p. 20). Thus, capabilities in this sense are not innate, but nurtured (or not nurtured,as the case may be) by prenatal and postnatal environments and experiences.These capabilities are ‘the innate faculties of the person that make later developmentand training possible” (p. 24). The flip side capability is functioning: a functioning is‘an active realisation of one or more capabilities’ (Nussbaum, 2011, p. 25)Nussbaum cautions against equating this approach with the idea that people’spolitical and social entitlements should be proportional to their innate intelligence orskill. Instead, she argues that‘. the political goal for all human beings in a nation ought to be the same: allshould get above a certain threshold of combined capability, in the sense notof coerced functioning but of substantial freedom to choose and act. That iswhat it means to treat all people with equal respect. So the attitude towardpeople’s basic capabilities is not a meritocratic one – more innately skilledpeople get better treatment – but, if anything, the opposite: those who needmore help to get above the threshold get more help.’ (p. 24).This conclusion is – that those who those who need more help to develop theircapabilities should receive it – is one that resonates strongly with the literature oninclusion of children with developmental disabilities in mainstream settings. It haslong been recognized that providing such children with access to mainstreamprograms and settings is a necessary but not sufficient condition for them to benefitfrom such opportunities: as well as access, they need specific additional supports toenable them to gain the same benefits as other children (Buysse, 2011; Odom et al.,2002; National Professional Development Center on Inclusion, 2011).Meaningful participationThe reason why children need to develop functional capabilities is to participatemeaningfully in all aspects of their lives. In the World Health Organization’sInternational Classification of Functioning, Health and Disability (2001), participationis defined as ‘involvement in a life situation’ (p. 10). In a joint statement on earlychildhood inclusion, the Division for Early Childhood and the National Association forthe Education of Young Children (2009) in the US identify participation as one of the
three defining features of inclusion in early childhood settings. In this statement,participation means ‘using a range of instructional approaches to promoteengagement in play and learning activities, and a sense of belonging for every child.’What evidence do we have that participation is important for children? Law et al.(2006) have summarised the research regarding participation, and conclude thatparticipation in everyday environments is vital to the health, development and qualityof life of all children. Does that include children with disabilities? King et al. (2002)see participation and quality of life as the principal long-term outcomes ofintervention services for children with disabilities: ‘Participation in activities is thecontext in which people develop competencies, gain an understanding of theirstrengths and abilities, form friendships and relationships, and make a contribution totheir worlds.’ Participation is both the ultimate goal of intervention services and thecontext in which children develop, and is thus both a process and an outcome (Kinget al., 2002). Children with disabilities face many obstacles and restrictions in the lifeexperiences and opportunities needed for the development of capabilities that willenable them to participate meaningfully (King et al., 2002, 2003; Law et al., 2006).To overcome these obstacles and restrictions, they need inclusive environments(that is, environments that are accessible, accommodating, socially supportive andnon-discriminatory) and specific supports from families, early childhood professionalsand early childhood intervention services.Why meaningful participation? Participation is more than being present in differentenvironments – the person must be actively engaged and their involvement must bemore than tokenistic. For participation to be meaningful, the person’s role andcontribution must be valued by all those involved in the activity, including the personthemselves.Quality of lifeThe reason we want children to be meaningful participants in everyday environmentsis because meaningful participation is the engine of development and the key toattaining a true sense of belonging and a satisfactory quality of life. The concept ofquality of life is one that has been invoked increasingly in discussions of outcomesfor children (Axford, 2008; King et al., 2002, 2003; Roche, 2001; Rosenbaum, 2008).The World Health Organization (WHOQOL Group, 1995) has defined quality of lifeas ‘individuals' perception of their position in life in the context of the culture andvalue systems in which they live and in relation to their goals, expectations,standards and concerns’ (p. 1405). In this definition, quality of life is a broad rangingconcept, multi-dimensional, and subjective.Is quality of life a useful concept to apply to children with disabilities? Despite themultidimensional and subjective nature of the notion of quality of life, King et al.(2002) argue that it provides a useful conceptual framework from which to considerthe outcomes of services and supports offered to people with disabilities. Thecomponents of quality of life are the same for people with and without disabilities.These have been described in terms of the life domains of being, belonging, andbecoming (Raphael et al., 1996; Woodill et al., 2004), the same three domains thatserve as a framework for Australia’s Early Years Learning Framework (Council ofAustralian Governments, 2009). In a related formulation based on interviews with
adults with disabilities (King et al., 2003), people attain meaning (and therebyperceive their lives to have quality) through doing (being engaged in meaningfulactivities), through belonging (having secure relationships with others), and throughachieving self-understanding (a set of beliefs or values that guide how one lives).Participation is clearly central to quality of life. As Rosenbaum (2008) notes,‘To the extent that people are able to do the things that are important to them,to participate in whatever ways enable ‘engagement’, their quality of life isprobably better than were they thwarted in ‘participating’.When we succeed in helping children gain the skills that enable them to participatemeaningfully in the key environments in their lives, we improve the quality of theirlives. Meaningful participation and satisfactory quality of life are what we want for allchildren, not just those with disabilities or developmental delay. However, to improvethe quality of life for children with disabilities, we need more than tolerance oracceptance: ‘The vision is one of true participation and integration, whereenvironmental supports, positive community attitudes, and strengths of individualsconverge to support people in pursuing their own goals and reaching their potential’(King et al., 2002).Studies of quality of life of people with disabilities have revealed an apparentparadox (Albrecht & Devlieger, 1999): many people with serious and persistentdisabilities report that they experience a good or excellent quality of life when to mostexternal observers these individuals seem to live an undesirable daily existence.This is also true for children. A European study of self-reported quality of life of 8–12year-old children with cerebral palsy found they had similar quality of life to childrenin the general population in all domains except schooling, in which evidence wasequivocal (Dickinson et al., 2007). The authors comment:Is it surprising that subjective quality of life of children with cerebral palsy issimilar to that of the general population? Possibly, from the perspective of anon-disabled adult imagining what it would be like to be disabled, but probablynot from the perspective of a child whose sense of self from birth incorporatestheir impairment and who embraces growth, development, and living with thesame excitement as most children.Rosenbaum (2008) supports this interpretation, noting that children’s functionalstatus (as distinct from their ‘limitations’) is not automatically an impediment to a selfexperienced quality of life that is comparable to that of other children of their age. Healso points out that we should not assume that these non-disabled peers are all‘normal’ or ‘able-bodied’ or ‘typical’. In other words, functional abilities (and limitationsthereof) should not be equated with self-described quality of life. Rosenbaumsuggests that we need to challenge the assumption that the lives of children withchronic conditions are impoverished and of lesser quality. An emphasis on‘possibilities’ and ‘what can be’ would reflect a healthy approach to understandingand celebrating life’s variations, including those that lead to disability. Here we seeclear parallels with the capabilities approach of Sen and Nussbaum.
ConclusionTo conclude, a number of strands of thought converge to suggest that the overalloutcome we want for children, with or without developmental disabilities, is that theygain the functional skills or capabilities they need to participate meaningfully in theirdaily environments.It will be noted that this formulation only refers to two of the key concepts justdiscussed – developing capabilities and meaningful participation. This is because thethird concept – quality of life (including a sense of belonging) – is subjective and isone of those goals (like happiness) that is best approached obliquely rather thandirectly (Kay, 2010). Being satisfied with one’s quality of life and feeling that onebelongs are by-products of the other outcomes, namely, gaining the functional skillsto participate meaningfully. If we succeed in helping children develop the functionalskills they need for their daily environments and in ensuring that these environmentsaccommodate and value their involvement, then the children will come to feel thatthey are accepted and are more likely to report that they are satisfied with the qualityof their lives.Although we want the same goals for children with and without developmentaldisabilities, it is obvious that, for children with developmental disabilities, developingthe functional skills they need to participate meaningfully in their daily environmentcan be problematic. For a start, there is the question of access (or, in Nussbaum’sterms, opportunities): in order to begin to build functional skills, such children needready access to the relevant environments, and that is not always guaranteed.Secondly, mastering the necessary functional skills (or capabilities) is more of achallenge for them, and additional supports and specialist help are needed; again,these are not always guaranteed. The existence of these problems do not, of course,mean that the goals we have identified are inappropriate for children withdevelopmental disabilities, but simply alerts us to the challenges that must beovercome if we are to help them achieve these goals.Having previously established that children with developmental disabilities developand learn in the same basic ways as other children, we have now shown that theoutcomes we want for children with developmental disabilities are the same as thosewe want for all children: to gain the functional skills or capabilities they need toparticipate meaningfully in their daily environments.With these general thoughts in mind, we will now examine the rationale and aims ofearly
Moore, T.G. (2012). Rethinking early childhood intervention services: Implications for policy and practice. Pauline McGregor Memorial Address presented at the 10th Biennial National Conference of Early Childhood Intervention Australia, and the 1st Asia-Pacific Early Childhood Inter
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