A better place? Factors in community assessment for parents of children with Down syndrome

Amelia N. Gibson

doi:10.1002/meet.2014.14505101063

Abstract

ABSTRACTInformation seeking often occurs in groups and communities, and these communities differ in ways that impact their usefulness to their members. This study uses grounded theory and information horizons mapping to explore information seeking and sharing in two place‐based communities in Florida, addressing factors associated with participants’ evaluations of their local communities of support. These factors provide insight into parents’ expectations of their information worlds and expectations related to information behaviors of actors within their local information environments. The study finds similar stakeholder groups similar expressions of the belief that some communities were “better” than others for raising children with Down syndrome in both areas, but varying evaluations of their own communities based on personal experiences. Participants agreed on the following factors as important indicators of a strong local community of support: existence and activities of local parent networks and organizations, access to quality education and health care, full inclusion in regular education when desired, social inclusion of their children into the community at large, and employability for adults with Down syndrome.

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A better place? Factors in community assessment for parents of children with Down syndrome

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CHAPTER 4: The biopsychosocial model and what it means for understanding inclusion in education - Brahm Norwich Introduction This chapter focuses on two specific pieces of Paul Cooper’s writing from 19 and 15 years ago respectively, namely his ideas about the biopsychosocial model and how he developed and used this perspective in unique ways to expand our thinking about inclusion and inclusive education. I believe this will give me the opportunity to show the detail of his analyses and way he engaged in the key debates going on in the field. It will also enable me to show the continuing relevance /of the arguments he voiced to current issues and concerns. Paul’s intellectual approach has been to oppose what he sees as false oppositions or dichotomies and this is something I have learned from and shared with him. The biopsychosocial model was for him a way to combine and bring together a more complex synthesis not just as an intellectual exercise, but as critical to enhancing educational practice, especially for those with disability and difficulties. A critical discussion of education, ADHD and the biopsychosocial (BPS) perspective Paul Cooper’s paper on the biopsychosocial perspective (Cooper, 2008) focuses on ADHD to propose a BPS model or what is called here a ‘paradigm’ as a way forward to address controversies amongst educationalists. Its argument had and continues to have much wider significance for the field of special educational needs and inclusive education. The main point in the paper was to show how the polarity between biological and social explanations for learning and behaviour problems had become redundant and unhelpful. ADHD it was stated was influenced by both biology and the social environment and indeed was ‘socially constructed’. But, this notion of social construction was not like the one adopted by the social model advocates referenced in the paper and still widely used in the 2020s. Shakespeare (2018, p. 68), for example, refers to the social model of disability as ‘the idea that people are disabled by society, rather than by their bodies’. What motivated Paul was the negativity towards the ADHD concept based on what he saw as: ‘outdated thinking and a lack of understanding of the diagnosis and the biopsychosocial paradigm through which it can be usefully understood’ (p. 457). Before examining the arguments about a social or a BPS model of ADHD, it worth exploring the usage of the terms in these models in written publications generally and in relation to academic research publications in education. Using the google ngram viewer system shows that the phrase ’social model of disability’ is used 114 times more in those texts covered within the google system than the phrase ‘biopsychosocial model of disability’ published in 2019. In addition, references to the phrase ‘social model of disability; increased 2.6 times from 2000 to 2019. By contrast, the use of the phrase ‘biopsychosocial model of disability’ increased more rapidly by 9.3 times, over the same period. Though this analysis is confined to those ngram accessed books in English, it does show that the ‘social model’ was used in this corpus considerably more than the ‘BPS model’. This is so even when the ‘BPS model’ had a greater increase in usage compared to the ‘social model’ over this almost two decade period. This picture is repeated when examining research literature references in education using the Education Research Complete database (ERC). In a search for literature with the terms ‘inclusive education or inclusion or mainstreaming or integration’ and either ‘biopsychosocial model’ or ‘social model’, it was found that there were 13 times as many references for social model than BPS model. It is clear from these analyses that Paul Cooper’s position has not been widely adopted since the 2000s and into the late 2010s, despite the international interest in the WHO International Classification of Functioning (ICF), which adopts a BPS model of disability (Hollenweger, 2012). My argument here is that this does not detract from the value and importance of the arguments in his paper. I am not going into the details of the case for the usefulness and risks in the use of medical classification systems that include ADHD as the most prevalent of childhood behaviour disorders. Cooper’s 2008 paper does this, and no doubt since then the current state of knowledge about ADHD has changed. What I will focus on is the argument made by Paul Cooper about the involvement of biological processes in functioning that comes to be identified as ADHD. Here he considered evidence for there being a problem in the response inhibition system, involving neuropsychological executive functioning mechanisms implicating physiological processes in the frontal lobes of the brain. In addition, he also implicates the genetic studies that have shown a much greater incidence of ADHD among identical than non-identical twins and among children who are biologically related as opposed to adopted. What he resists is the polarising between recognising these biological processes on human behaviour and the social processes; the either – or in favour of the both – and perspective. This is a central point in the commentary I am making of Paul Cooper’s positions and one which will be made too in relation to his ideas about inclusion in education below. The BPS model he is advocating rejects a biological determinism and represents biological factors as being mediated by psychosocial processes; the biological is subjected to social construction at various social and psychological levels. See Figure 4.1 which represents this kind of BPS model. In this respect the BPS model he advocates has strong links to Bronfenbrenner’s bio-ecological model (Bronfenbrenner and Morris, 2006). It is notable that many references to Bronfenbrenner’s ecological model have tended to also split the biological from the psycho-social (Tudge et al., 2009). Figure 4.1 Factors in interaction in the bio-psycho-social model of ADHD Critical reactions to ADHD have involved the dismissal of ADHD by some as a medical construct that individualises educational failure and disruptive behaviour. Part of the aversion to ADHD has been its use to legitimise the practice of using drugs as a form of social control of defiant children. Some argued this approach represented wrong-headed pseudo-science. The argument which Paul Cooper focussed on was the assertion that this individualised these problems, distract from how schools and teachers were involved in these problems, and so absolve them of responsibility to provide relevant opportunities for these groups. He countered this argument by claiming that the BPS model recognises that schools are a major setting through which institutional control and pedagogical practices contribute to the construction of ADHD. In his argument for a more complex BPS model, he countered the arguments of authors like Slee (1995) who were critical of what they portrayed as: ‘The monism of locating the nature of [classroom] disruption in the neurological infrastructure of the child is myopic and convenient’ (Slee, 1995, p. 74). Slee has continued this critical line of argument with his more recent views about the language of special educational needs in referring to: ‘the saturation of our discourse and thinking with the quasi-medical posturing of special educational needs. The conceptual foundations and usage of terms like special educational needs passes without a second thought’ (Slee, 2018; p. 78). Paul Cooper’s thorough response to four challenges from the critical perspective continue to be very relevant to the current circumstances. Firstly, it has been claimed that the ADHD diagnosis is somehow bogus or ‘illicit’ because there is an absence of neuro-scientific evidence. In this article he illustrates how this is ‘patently untrue’ (p. 463). Secondly, ADHD is sometimes claimed to be an example of biological determinism, a claim which expresses a fear of determinism and its associated denial of human agency. Here he has sympathy with this fear but shows how this is not well founded as regards developmental opportunities, given the interaction between biological inheritance and environmental factors in the development of behavioural difficulties. Paul Cooper argued that not only were there several biological pathways implicated in the development of ADHD, but that ADHD is not biologically determined in the simplistic sense suggested by some; see the Slee quote above. He turns the argument by ADHD critics about ADHD diverting attention from school factors against their position. He suggests that portraying ADHD as an example of biological determinism, itself diverts attention from converting a biopsychosocial account of ADHD into pedagogical and other interventions. By knowing more about the biological, psychological and social factors in ADHD enables us, he argued, to avoid aggravating experienced difficulties and promoting educational engagement. The third challenge he addressed was that an ADHD ‘diagnosis’ rests on value-laden, culturally-specific judgements about behavioural or cognitive norms. Here Paul Cooper adopts a perspective, not often found in debates about behaviour difficulties and school education norms. He recognised that children who are biologically predisposed to develop ADHD can be at a disadvantage by culturally based assumptions about appropriate school and classroom behaviour. But, this, he argues, does not reflect on the clinicians who identify ADHD, but reflects on the weaknesses of, what he called, ‘Western mass education’. This issue is about whether to change the educational environment to accommodate the student or to change the student to enable him or her to engage with an unchanging environment. As Paul Cooper recognised the attempt is often made to combine environmental and individual changes. He suggested that using medication can be seen as the failure of the school to make changes that enable the student with ADHD to engage effectively. The implications for those wanting to make schools more inclusive is to learn the lesson that ADHD teaches about shaping the educational environment to improve learning opportunities. In discussing how he approached this challenge, it is also notable that some psychologists have adopted more recently a BPS model of ADHD and supplemented the social aspects with a focus on the cultural aspects that relate to the mental health needs of culturally and linguistically diverse children and young people (Pham, 2015). The fourth challenge Paul Cooper responded to was that accepting an ADHD diagnosis ‘legitimise[s] the practice of drugging defiant children into docility’ (Skidmore, 2004, p. 4). To this he points out that informed opinion does not consider medication for ADHD as an essential treatment, and that whatever is decided is to be in the context of a multi-modal treatment programme that includes psychosocial and educational interventions. In his paper he refers to the UK guidance from 2000 and this is still the current guidelines (NICE, 2018). How parents participate in intervention selection is also illustrated in Pham (2015). The linked and final challenge he dealt with was that ADHD represents the wrongful medicalisation of defiance in school children. Here Paul Cooper questioned the link between defiance and the functional issues associated with ADHD. He suggested that defiance is better considered as a cognitive distortion affecting social engagement rather than a deficit in executive functioning associated with ADHD. So, not complying with parent wishes is seen as non-volitional and not to be confused with defiance. For him what was concerning was the ‘high moral tone’ (p. 470) which concealed limited understanding about ADHD that he believed could be dangerous. A crucial difference between the social and BPS models In defending the BPS model from critical arguments, Paul Cooper did not examine the ideological or value basis for the knowledge claims in these debates. From a critical perspective, it has been suggested by Slee & Weiner (2001) that it is possible to identify two groups of researchers, which they characterise in these terms, namely those who work within, what they call the ‘positivist paradigm’, accept the way things are, attempt to make marginal reforms and who criticise ‘full inclusion’ as ideological; and those who see inclusive education as cultural politics and call for educational reconstruction. This distinction between a positivist / technical versus cultural political position can be aligned with one between an investigatory versus an emancipatory perspective to research about disability (Oliver, 1999). Oliver frames the research-as-investigation as the dominant form of social research which is unacceptable to oppressed groups, such as those with disabilities, who aim to collectively empower themselves. In this perspective the social model of disability expresses the emancipatory stance which is pursued through cultural politics. This contrasts with a technical – interventionist perspective that derives from what Slee and Weiner (2001) call a ‘positivist paradigm’ and is associated with what is called a medical or a bio-medical model. It can be seen that this dichotomy between research stances embraces the splitting which Paul Cooper argued against. Figure 4.2 below represents these distinct research stances as adopting emancipatory or investigatory values, while showing their main focus and linked assumptions. With emancipatory values the main focus is on reducing the oppression of the vulnerable with this being done through collective socio-political action and in doing so entailing a causal assumption that it is the dominant social system that oppresses. With investigatory values, the main focus is on identifying complex causal models of a phenomenon and in doing so assumes that this knowledge can be used for subsequent improvement interventions. Figure 4.2 Value bases underlying different research stances One of the main arguments in this chapter is that there are links and common elements to these two basic value positions, so raising questions about the split and opposition between them. Both connect knowledge with action for social change, on one hand, and both assume some causal processes, on the other. The difference is in the assumptions of their main focus. Identifying complex causal processes (e.g. that includes social processes as part of a BPS perspective) is the primary focus of the investigatory stance, while change depends on applying this knowledge in interventions. This stance represents an outsider-spectator-intervenor perspective. By contrast, reducing the oppression of the vulnerable is the primary focus of the emancipatory stance, with this being through collective political and social action. This stance represents an insider-participator perspective. So, while distinct, there are connections to be recognised between them which can help to understand what the social stands for in these two models. The social in the social model stands for where change is to be focussed; in the socio-political arena. The social, by contrast, in the BPS model stands for the social factors that need to be understood in their interaction with bio-psychological causal factors. Making use of the distinction between insider-outsider role perspectives enables us to see how these different value stances can be connected and not seen as opposites to select between. As Paul Cooper argued in his 2008 paper, informed opinion does not consider medication for ADHD as an essential treatment / intervention; the BPS model implies multi-modal methods including psychosocial and educational interventions (NICE, 2018). Intervention / treatment acceptability is also an important consideration when considering individual children with identified ADHD from a BPS perspective, as illustrated in Pham’s (2015) case study. This implies that parents and young people will participate in action decisions, which gives them an insider role. However, the social model goes beyond insider participation at the individual level, to involve collective participation at institutional and societal levels too. This is where the BPS model could be open to insider participation beyond the individual level, to see the value of institutional and societal participation too. And, as the BPS can be open to the collective action of the social model, so the social model can be open to the outsider perspective’s recognition of multi-level causal processes (including the bio-psychological levels) and their associated interventions. Inclusion as a buzz-word In this 2008 paper Paul Cooper suggested that the use of insights from the BPS model in developing educational provision is likely to lead to a more genuinely inclusive education system. This was written after an earlier editorial he wrote in the journal Emotional and Behavioural Difficulties in 2004 (Cooper, 2004). Here he pointed to the overuse and misuse of the word inclusion, suggesting that it will lose its meaning and that the purposes for which it was coined will become neglected. One way of challenging this misuse, he mentioned, was to be vigilant about how it is used and to call for greater clarity. In this editorial he stated that social inclusion is about active participation and engagement with other people. With inclusive education, he continued, it is not just about social inclusion, but an individual’s active engagement in formal learning processes. Here Paul Cooper goes beyond common ideas about inclusion which are defined in terms of social and academic participation (as in the Inclusion Index; Booth and Ainscow, 2011), by clarifying that it is also about academic and social engagement. From this it was clear that inclusion was more than both location / placement and social interaction with other people; it was also about personal engagement with others and with formal learning. Paul Cooper was not alone in linking engagement with inclusion, he shared this with Mary Warnock, the chair of the Warnock Committee which in 1978 set out new policies about the education of children and young people with disabilities and difficulties (Warnock, 2005). In her 2005 policy paper she rejected the idea of educational inclusion as about ‘all children under the same roof’. She preferred a learning concept of inclusion, which was about: ‘including all children in the common educational enterprise of learning, wherever they learn best’ (Warnock, 2005). Though she does not use the term ‘engagement’ as such, her notion of learning where done best connects with ‘engagement’ and prioritises this over placement, a view which was also adopted later by Paul for the area of education of children and young people with social, emotional and behaviour difficulties (Cooper and Jacobs, 2011). Paul Cooper drew on the psychological ideas of Marjorie Boxall in the Boxall Profile (Bennathan and Boxall, 2003) to connect Inclusion with engagement, as he mentioned in his 2004 editorial. For him engagement was at the heart of educational inclusion from a cognitive perspective. He adopted the five subskills of what the Boxall Profile termed ‘the organization of experience’: whether the child gives purposeful attention, participates constructively, connects up experiences, shows insightful involvement and engages cognitively with peers. Within this framework he recognised that children with social, emotional and behavioural difficulties (SEBD) can have problems with some or all of these skills. So, it can be argued that the child who experiences SEBD is socially, emotionally and cognitively excluded from what is going in class lessons; with SEBD being framed as a barrier to inclusion. This concept of a barrier is very different to that proposed from a social model perspective as in the Inclusion Index (Booth and Ainscow, 2011), in which barriers are only external to the person. But, Paul Cooper does not draw the conclusion that children with SEBD can never be ‘included’. Here he makes the distinction between inclusion-as-location and inclusion-as-engagement, with the implication that in some cases when there is not mainstream class inclusion this does not mean there cannot be some engagement inclusion. He also reminded us that inclusion is such that nobody is ever fully included in any situation all the time. In this sense his ideas resemble Qvortrup and Qvortrup’s (2018) argument that inclusion and exclusion are connected through peoples’ simultaneous involvement in different social arenas. With social interactions involving negotiations in all situations, Paul Cooper argued that any episode can result in tensions and the rejection of the people involved . This is a feature of our lives and in this respect the child experiencing SEBD is no different from others. However, he pointed out that the child or young person with a SEBD is at greater risk of rejection or exclusion, which may be attributed to individual characteristics in interaction with social circumstances (in line with a BPS model). Using this notion of engagement, he also approached the questions of teaching children and young people with SEBD in terms of the BPS model. In avoiding a focus just on problems located in the student, he adopted an interactionist perspective that combined specialist teaching knowledge about individual differences with teachers’ practical thinking about decision-making that led to adapted teaching (Cooper, 2004). He reviewed in this 2004 chapter and in his later 2008 paper discussed above, the various teaching strategies that research had shown to promote further engagement for children with ADHD. It is useful here to compare his engagement perspective to a well-known ‘Inclusive Pedagogy (IP) framework for participation in classrooms’ developed by Florian and Black-Hawkins (2011). This framework in covering access, collaboration, achievement and diversity aimed to extend what was typically available in the classroom community to all. It avoided having learning activities for most being alongside different activities for some who experience difficulties. It also proposed differentiation by pupil choice for everyone while rejecting ability grouping. This is an approach that required flexibility to be driven by need and not curriculum coverage, while seeing difficulties in learning as professional challenges rather than learner deficits. Though Paul Cooper’s perspective agreed with some elements of this inclusive pedagogy framework (e.g. flexibility and responding to learning difficulties as a challenge), his does not accept the either-or polarity at the core of the framework with the adoption of only one option: differentiation by choice v. by grouping and only opting for the former, or seeing learning difficulties as a professional challenge v. learner deficits and opting only for the challenge option). This IP framework reflects the medical v social model polarity that he argued against while favouring a BPS model. Based on his approach of seeing social and academic engagement as being at the heart of educational and social inclusion, he believed that it followed that: ‘students are best placed in educational settings where they have access to and support for maximum social and academic engagement’. (Cooper, 2004, p. 222). In his view, this meant that there was no simple way to decide about the provision setting. For some pupils this meant access to various forms of provision, but always a detailed analysis of individual capabilities and needs as well as what provision affords should determine the decisions. Conclusion This chapter has focussed on two of Paul Cooper’s papers in which he explained and justified his ideas about the biopsychosocial model and how he developed and used this perspective in unique ways to expand our thinking about inclusion and inclusive education. Through relating and contrasting these with other contemporary and current ideas I hope to have shown his distinctive and insightful contribution. I have also tried to extend his adoption of a both-and rather than an either-or approach by discussing the epistemological and value bases of different models, on one hand, and how difference and distinction does not imply irreconcilable opposition between the key models in the field. References: Bennathan, M. & Boxall, M. (2003) The Boxall Profile. East Sutton: SEBDA. Booth, T. and Ainscow, M. (2011) Index for Inclusion: developing learning and participation in schools. 3rd ed. Bristol: CSIE. Bronfenbrenner, U., and Morris, P. (2006) The bioecological model of human development. In W. Damon & R. M. Lerner (Eds.), Handbook of child psychology: Vol. 1. Theoretical models of human development (6th ed., pp. 793–828). Hoboken, NJ: Wiley. Cooper, P. (2004) Is ‘inclusion’ just a buzz-word?, Emotional and Behavioural Difficulties, 9:4, 219-222, DOI: 10.1177/1363275204051391 Cooper, P. (2004) ‘AD/HD’, in A. Lewis & B. Norwich (eds) Special Teaching for Special Children? Pedagogies for Inclusion. Buckingham: Open University Press. Cooper, P. (2008) Like Alligators Bobbing for Poodles? A Critical Discussion of Education, ADHD and the Biopsychosocial Perspective. Journal of Philosophy of Education, 42, 3-4, 457-474. Cooper, P. and Jacobs, B. (2011) From Inclusion to Engagement: Helping Students Engage with Schooling Through Policy and Practice. London: Wiley. Florian, L. and Black-Hawkins, K. (2011) Exploring inclusive pedagogy, British Educational Research Journal, 37, 5, pp. 813-828. Hollenweger, J. (2012) Using the International Classification of Functioning, Disability and health Children and Youth version in education systems. American Journal of Physical Medicine and Rehabilitation, 91, 13, pp. 97-102. NICE (2018) Attention deficit hyperactivity disorder: diagnosis and management NICE guidelines. Published: 14 March 2018. Access on 23.5.23 www.nice.org.uk/guidance/ng87 Oliver, M. (1999) Final accounts and the parasite people. in Corker, M. and French, S. (eds.) Disability discourse. (eds.) Maidenhead: Open University Press. Pham, A.V. (2015) Understanding ADHD from a Biopsychosocial-Cultural Framework: A Case Study. Contemporary School Psychology, 19:54–62. Qvortrup, A. and Qvortrup, L. (2018). Inclusion: Dimensions of inclusion in education. International Journal of Inclusive Education, 22(7), 803-817. Shakespeare, T. (2018) Disability: the basics. London: Routledge. Skidmore, D. (2004) Inclusion. Buckingham,: Open University Press. Slee, R. (1995) Changing Theories and Practices of Discipline. London, Falmer. Slee, R. and Weiner, G. (2001). Education Reform and Reconstruction as a Challenge to Research Genres: Reconsidering School Effectiveness Research and Inclusive Schooling. School Effectiveness and School Improvement, 12:1, 83-98, DOI: 10.1076/sesi.12.1.83.3463 Slee, R. (2018) Inclusive Education isn’t Dead, it Just Smells Funny. London: Routledge. Tudge, J.R.H., Mokrova, I., Hatfield, B.E. and Karnik, R.B. (2009) Uses and Misuses of Bronfenbrenner’s Bioecological Theory of Human Development. Journal of Family Theory & Review, 1, 198–210. Warnock, M. (2005) Special Educational Needs: A New Look. London: Philosophy of Education Society of Great Britain, Impact Series No. 11.

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A better place? Factors in community assessment for parents of children with Down syndrome

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