Inclusive and Supportive Education Congress
International
Special Education Conference
Inclusion: Celebrating Diversity?
1st - 4th August 2005. Glasgow, Scotland
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Inclusive and Supportive Education Congress 1st - 4th August 2005. Glasgow, Scotland |
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Phil Bayliss,
SELL, University of Exeter, Heavitree Road, Exeter, EX1 2LU.
Abstract: The positioning of children within academic discourse sets up expectations within participants in the discourse. The discourse of inclusion positions children with ‘profound and multiple learning difficulties’ (together with ‘children with challenging behaviour’) as being the’ most difficult’ to include.
The paper explores the nature of inclusion for ‘children with profound and multiple learning difficulties’ with reference to a Scope/DfES funded project which took place in the South West of England within 3 primary schools, which used three ethnographic case studies –for’ Peter’,’ Katie’ and ‘Billy’. The paper starts from a theoretical perspective as it is important for me to position myself with regard to the core issues within the inclusion field, but the main focus is on the practice of supporting a child with extraordinary needs within an ordinary setting. The research outcomes for the Project directed attention towards a model of complex support which raises implications for both theory and practice. The Project raised issues of ethics, teaching and pedagogy, partnership between ordinary and special schools, the role of parents and the nature of ‘support’ itself.
In the recent past there has been a shift towards the goal of achieving education in ‘the least restrictive environment’ for children with disabilities. Students with severe and multiple disabilities are taught in a variety of settings, from totally segregated to fully inclusive. In the UK, the doctrine of inclusion, as applied generally to students with disabilities, has usually resulted in increasing placements in mainstream schools.
From an educational perspective, recent UK Government legislation and guidance (SENDA) argues that an inclusive school expects all students within its community to be educated alongside each other. It sees the diverse needs of children as an opportunity to develop its approaches to teaching and learning and thereby achieve excellence for all learners. The goal of inclusion is therefore not to eliminate differences, but to enable all children to flourish within an educational community that values their individuality.
However, it is also understand that for a small number of children it may be that a
mainstream school is not appropriate, or at least not for the whole of their school career
and that specialist provision should be retained. The rationale for specialist provision is either that the presence of disabled children in a mainstream settings would disrupt the education of other (non-disabled) children, or that the child would not benefit from a ‘normal’ education –normal here is used statistically in the sense of ‘average’.
Within a wider social welfare model, for children and adults with severe and profound learning difficulties the concept of inclusion is seen as a key principle of service provision. The White Paper -'Valuing People' (Department for Health, 2000) sets out the Government’s commitment to improving the life chances of people with learning disabilities. It shows how this commitment will be met by working closely with local councils, the health service, voluntary organizations and most importantly with people with learning disabilities and their families to provide new opportunities for those with learning disabilities to lead full and active lives. However, the White Paper was criticized by the pmld Network (2002) with regard to children and adults with profound and multiple learning difficulties, in that:
‘ It is (their) view that ‘Valuing People’ does not fully address the issues for children and adults with pmld. This is apparent in the way that it does not:
• use consistent terminology
• identify that children and adults with pmld are amongst the most excluded people in our society
• identify children and adults with pmld as a priority group
• make any specific objective or sub-objective for people with pmld
• identify family carers of children and adults with pmld as a priority group’. (pmld Network, 2002:2)
The White Paper for people with Learning Difficulties, outlined the four key principles of:
but for people with profound and multiple learning difficulties (pmld), ‘whilst the overall vision is the same as for their more able peer group, the detail for children and adults with pmld is often different. Children and adults with pmld have specific needs that call for specific initiatives. All too often, their needs are lost within the wider agenda’ (ibid: 3).
The problem of identification of children and adults with profound and multiple learning difficulties is compounded through a lack of consensus of definition and the collapse of a heterogeneous population into a single category: ‘profound and multiple’. In this respect it difficult to obtain any overall view of prevalence.
The UK Office of National Statistics (ref –National Census Data) report an overall increase in disabled children (0-16) from 7,334 in 1990 to 9,648 in 2000 (32%% increase). For children with ‘global developmental delay’, the population increase is from 3 (1990) to 347 (2000): an 11,467% increase (see Figure 1), while for children with ‘autism and behavioural disorders’ have increased 6319% (from 329 in 1990 to 2408 in 2000).
The comparatively huge percentage increases in ‘challenging disability’ categories have been mirrored by stable or slightly declining figures for other categories of disability, e.g., Mental Handicap has remained relatively ‘flat’ (increase 10%) while the populations of children with Down’s Syndrome or Cerebral Palsy has reduced 28% and 14% respectively.
Recent figures published by the School’s Census (DfES, 2004) show 6380 children with pmld in special schools and 1800 in primary and secondary schools (1140 and 640 respectively) –see Figure 2. These figures represent some 0.09% of the whole population of school aged children –see Figure 3.
Figure1 Distribution of ‘Global Developmental Delay’ For 0- 16-Year-Olds, 1990–2000. (Office Of National Statistics, 2005)
Figure 2 Distribution of children with pmld (DfES, 2004)
Figure 3 Pmld children in the UK (DfES, 2004)
Figure 3 is particularly telling, in that statistically, children with pmld are invisible. It represents a low incidence impairment/disability. The figures for the UK are broadly in line with scant data available from elsewhere: 0.6 and 0.8 per thousand (France/Australia). Cerebral palsy accounts for between 20 per cent and 30 per cent of the group (Evans and Ware 1987; Wellesley et al. 1992).
The categorical nature of the condition of ‘pmld’ may comprise diagnostic descriptors which locate a child or adult within a conceptual space. The label must be approached with caution as the categorical nature of the range of conditions which can be subsumed under a rubric of ‘pmld’ do not allow easy definition of the range of impairments experienced by any given child. Definitions may be ‘syndrome’ led or use functional descriptors related to constructs such as mental age, IQ or developmental age. Such norm referenced measures do not apply to the group of children/adults with pmld as they lie on the statistical boundaries of norm referencing. If all children are unique, those with pmld are more unique than others. ‘Profound and multiple learning difficulty’ is a reification of a sub-group of children with ‘mental retardation’.
A medical discourse sees:
"(m)ental retardation" (as) different from other mental disorders in that this term does not denote a disease entity with a single cause, mechanism, natural course, or prognosis. It refers to a heterogeneous behavioural syndrome, characterized by impairments in a person's current level of intellectual and adaptive skills. MR is not necessarily lifelong. Persons who carry this diagnosis present with a wide spectrum of abilities and disabilities, and clinical and behavioural patterns. (AACAP, 1998).
Ware (2004) noted that ‘When (they) originally introduced the term ‘profound and multiple learning difficulties’ it was in an attempt to overcome the problems caused by the lack of a clear definition for that group of children who had both a profound level of learning difficulty and other severe impairments, and who, in England and Wales at that time, were normally educated in the ‘Special Care’ classes of SLD schools. Since (they) originally coined the term there has been much debate about its utility and appropriateness, and a number of alternatives have been suggested (e.g. Complex Needs; Profound Intellectual and Multiple Disability (PIMD): Hogg 1991).
The UK education system uses the term proposed by the Warnock Committee: learning difficulties rather than learning disabilities. Warnock adopted the notion of a ‘continuum of learning difficulties centred on psychological and social adaptation to the world’ (i.e. functional definitions) which resulted in a shift away from labelling and categorisation to identification of ‘special educational needs’. The concept of SEN is firmly rooted in a medical discourse: developmental tests and assessments of adaptive functioning are used to identify a ‘learning difficulty’ and while distinctions are made regarding ‘moderate learning difficulties’ (MLD- IQ range 55-70) and ‘severe learning difficulties (SLD –IQ below 55), the category of ‘pmld’ (IQ below 20) is subsumed within the SLD categorisation.
Thus, the most recent definition adopted by the DfES (Schools’ Census data, 2004) reflects these medical model descriptors:
Profound and Multiple Learning Difficulty (pmld) - Pupils with profound and multiple learning difficulties have complex learning needs. In addition to very severe learning difficulties, pupils have other significant difficulties, such as physical disabilities, sensory impairment or a severe medical condition. Pupils require a high level of adult support, both for their learning needs and also for their personal care. They are likely to need sensory stimulation and a curriculum broken down into very small steps. Some pupils communicate by gesture, eye pointing or symbols, others by very simple language. Their attainments are likely to remain in the early P scale range (P1-P4) throughout their school careers (that is below level 1 of the National Curriculum). (DfES, 2004). ‘Profound and multiple learning difficulties’ are seen as distinct from ‘severe learning difficulties’. Defining characteristics include: significant motor impairments; significant sensory impairments; complex health care needs; dependence on technology. Such children will require specialist staffing and substantial support; an adapted curriculum and Individual Educational Plans; mobility aids and therapy programmes, together with frequent assistance and medical support (DfES, ibid).
The literature (and the DfES) pathologises the category within a strong version of the medical model of disability (see Scully, 2002 for a recent critique of the medical model of disability), and while the social model of disability (Oliver and Barnes, 1998) sees ‘disability’ as ‘oppression’ (in an educational sense, segregated education which denies full rights of access to ordinary environments and engagement with peers; inappropriate or ‘therapeutic’ curricula which deny opportunities for ‘ordinary’ learning), the group of children described as ‘pmld’ provide strong pause for thought about how a social model of disability can be simplistically translated into a model of ‘inclusion’ which is one simply of rights to access and participation. The nature of the way children with pmld engage with the world challenge inclusive and pedagogic models based on crude ideas of ‘differentiation’ and ‘support’. It is important to remember that for these children, ‘inclusion’ cannot be seen as ‘equality of opportunity’ (assimilating to an existing school culture), without significant accommodation to the child’s needs (‘equity’: Garner and Sandow, 1995)) –without significant and highly specialised support these children cannot gain access to a mainstream experience (see figure 1)
There are disputes in the literature about the precise meaning of ‘inclusion’. From an educational perspective, ‘total inclusion’ argues that disabled children should attend a regular school with all necessary adaptations and support necessary, while a specific definition of educational inclusion (OFSTED, 2000) adopts a position of equal opportunities for all pupils, whatever their age, gender, ethnicity, attainment and background. It pays particular attention to the provision made for and the achievement of different groups of pupils within a school. It assumes that a full-time mainstream setting may not be appropriate for some children, and that a continuing special school placement would the desired option for such children. For children with pmld, this heterogeneous population is overwhelmingly to be found in special schools or specialist (segregated) provision (Dee and Byers, 2002) –see also Figure 2 above).
The educational model of inclusion examines the relationship between placement and educational outcomes- thus, ‘education should aim to meet the (needs of young adults with profound and multiple disabilities) by offering an individually tailored education program within a properly constructed curriculum framework which use age appropriate activities, language, materials and teaching strategies…. Such a program will stretch and challenge the learner within a supportive setting’ (quoted in Goode and Hogg, 1994: 203). This curricular/pedagogic understanding of inclusion provides a rationale for segregated environments which are highly professionalized by teachers who can deliver ‘individually tailored activities’ designed to meet the specific cognitive and linguistic impairments of children with ‘pmld’. Where significant impairments create barriers to learning and to interaction between children and adults, or between children and their peers, ‘inclusion’ may focus on meeting social goals of both children with pmld and their mainstream peers. The cognitive content of ‘mainstreaming’ is seen as inappropriate for the child with pmld. Even though there have been recent advances in adapting curricula to meet the needs of the developmentally young, for example the introduction within the UK system of ‘P-levels’ (DfEE, ref), the extreme demands of differentiating the pedagogic process sufficiently to meet the needs of children with pmld, while at the same meeting the general needs of children within the general (statistically ‘normal’) range of ability, may result in a tokenistic approach to ‘inclusion’ which may further result in a social/locational placement, without any benefits accruing for the child with pmld outside of a simplistic notion of an unstructured ‘experience’. Thus, Lacey ( 2001) shows within her study that parents and LSA’s emphasise inclusion as being about ‘social opportunities, independence, social support and normalisation’ (91%), while only 9% of respondents saw inclusion as being about ‘academic achievement’ for children with pmld (and sld!). Teachers were rather better, with 31% seeing academic achievement as being a goal of inclusive practice.
This ‘traditional’ view of inclusion (Mithaug, 1998 ) distinguishes between achievement (academic or learning outcomes) and social outcomes. Thus, Mithaug (ref) criticises an ‘ideological’ approach to inclusion which dichotomises the outcomes of an educational process which assumes that segregated special schools achieve positive learning (academic) outcomes (especially in those areas of developmental needs or life skills), while ‘mainstream’ schools achieve positive social outcomes for children with learning disabilities. This view is further explored by Kunc who proposes 2 ‘visions’ of inclusion:
Model A: the child is required to master skills to enable the child ‘to be included’, and is only ‘allowed in’ when he or she has mastered those necessary skills.
Model B: the child is ‘allowed in’ and given appropriate support: the child will develop skills through the process of ‘inclusion’.
In Model A, children with pmld will never be ‘allowed in’, as they will never master a normatively defined set of skills; while Model B will only ‘allow them in’, with appropriate support. If this is seen within a common educational model of inclusion, ‘support’ relates to the presence of a ‘teaching and learning support assistant’ (TLSA) –a classroom aide, who mediates between the child and the pedagogic processes of the classroom (generally in a social sense (Lacey, 2001, Aird, 2000).
The School’s census data support a view of a small proportion of children attending primary or secondary schools –following Lacey (op cit) it is presumed that these children are in ‘resource rooms’ or special classes with access to mainstream provision. Anecdotally (there is no published research in this area which provides descriptive dta), several schools support inclusion opportunities as a form of outreach (Pratchett, 2000) where children with pmld are offered experiences within mainstream settings for varying periods of time (generally, 1 day per week –this is supported by an informal poll of members of the SLD-network maintained by BECTA). It is unclear what benefits accrue to children with pmld in these circumstances.
Ware (2004:133) reviews the literature regarding pedagogic issues for children with pmld: ‘Two characteristics of people with pmld which are not mentioned in the definition (of pmld), but which are of considerable importance in regard to pedagogy are behavioural state and behavioural rate. Studies of behaviour states in normal young infants suggest that they are only ‘ready to learn’ when awake and alert, which may be as little as 20 per cent of the time. A significant issue with regard to behavioural state -which causes considerable problems for teachers- is the amount of time some children with pmld spend either actually asleep, or drowsy. For example; Guess et al. (1990) found that in the group they studied, students spent less than half their time awake and alert. These students therefore spent half their school time in states which were not conducive to learning’.
The term ‘behavioural rate’ is used to refer to the average number of voluntary behaviours or actions which an individual produces per minute. Individuals with PMLD often have very low behavioural rates (Ware, op cit)
This is contrasted with unpublished work (Foremen et al, unpublished) which reports that in New South Wales. Au., children with pmld have been enrolled in general classes and funding support given to schools to support the process. Inclusive practice has resulted in
We can conceptualise inclusion in other ways. Mithaug (1998) describes inclusion in terms of access (participation) which may lead to engagement and to respect (solidarity and friendship). This accords with other work in the area of ‘community’ (Bayliss, 1998, 2003) which defines a community as a set interdependencies based on intersubjectivity generated through mutuality and reciprocity (belonging- see also Kunc, 1992).
A further view adopts a position of a ‘Quality of Life’. The concept of ‘Quality of Life’ has found a range of expression. One view, Woodill et al, (1994) adopts an existential-humanistic approach whereby a person comprises an embodied identity (‘Being’) – this is experienced in a particular context, a certain time, place and culture. Further, being a fully functioning healthy human is to be rooted (and accepted) in a community, an aspect of life referred to as Belonging. Further, action in the world depends on choice: ‘The things people chooses to do in their lives make them who they are, and who they will become. This unfolding aspect of life is referred to (…) as Becoming. (ibid: 62). Thus, within this model, Being, Belonging and Becoming are related holistically and are not dichotomised between cognitive or social outcomes. Inclusion in this view requires engagement in a world which supports well-being; relationships with others and a potential for growth (intellectually, physically, personally…..). Inclusion here is not focused on ‘placement’ (generalised location), rather on ‘moments of inclusion’, which are highly context bound –this is particularly important as the idea of a full-time inclusive placement for children with pmld is highly problematic for medical reasons. Providing ‘contexts of inclusion’ ought to support being, belonging and becoming –through the development of what Erickson (1996: 33/34) calls ‘the social and cognitive ecology of interaction in the classroom –a system of relations of mutual influence among participants (involving) the combination of (…) the reciprocal and complementary aspects of the organization of immediate social interaction in real time’. This constructivist approach, based on the psychology of Vygotsky (see Wertsch, 1985)) determines interdependence between children, their peers and adults, which underpins a generalised model of learning. The challenge for inclusion for children with pmld is to understand how whether inclusion, through engagement can result in an ‘ecology of interaction’ and to understand whether this process results in Being-Belonging-Becoming.
THE STUDY
The focus for the research was a staged project conducted by an Independent Special (Scope) School catering for children with cerebral palsy, complex needs and high support needs. Scope, as the UK national charity for people with Cerebral Palsy, run several non-maintained special schools. Recently Scope has revised its educational policy –embracing ‘inclusion’ as a policy directive. Scope is promoting an inclusive ethos and the process of ‘outreach’ has been conducted for some years (Pratchett, 2000) and funds were obtained from the DfES to conduct an exploratory study to examine ‘inclusion’ for children with pmld. The final stage of the Project will be completed in July, 2005. The initial stages of research did not seek to provide final data about the outcomes of the inclusion project. Instead, the early objectives of the exploratory stage were to understand how the process of integrated or inclusive education impacts on the child and others (both children and adults) and to derive a methodology and methods which enable the research to describe and explore issues related to ‘the inclusion of children with pmld’.
The complexity of understanding the needs of the individual child, and how these relate to educational processes which are themselves dynamic and mutable, does not direct the research design to specific methods or procedures.
The design adopted was a multiple-linked case study design (Yin, 1994) which investigates three children,’ Peter’, ‘Katie’ and ‘Billy’ and seeks to understand:
‘Nature’ and ‘impact’ coincide to raise questions about the process of supporting inclusive practice. From this arise a series of subsidiary questions:
The Project.
The Special School is a non-maintained independent special school run by Scope. It caters for children with profound and multiple learning difficulties between the ages of 5-19. The school is also a registered care home and offers respite accommodation, but all of the children in the school attend on a daily basis. The school has had a policy of integration/inclusion for some years, having built successful partnerships with local schools (both primary and secondary schools). The Scope school operated an ‘integrated nursery’ where day places were offered to a variety of children, not only those pupils of the school. For some older children, placements were organised in what ordinarily would have been their local primary schools. The children remain on roll of the special school and are transported from the school to their ‘placement’ schools. The children attended the primary schools for initially half a day, and subsequently for a full day per week. The children attended age-appropriate classess. The placements were set up through pre-placement negotiation and the three children were supported by specialist staff (learning support assistants) in the mainstream setting, and there was a high degree of liaison between the class teachers from the special and mainstream schools. All the children’s parents were highly supportive of the project. The choice of mainstream school was dependent on where the children lived –the aim was to establish links with what should, under other circumstances, have been the children’s ‘local school’.
All three children met the descriptive criteria for inclusion in the category ‘profound and multiple learning difficulty’ presented above and at the start of the project, all three were non-ambulant. Peter (7 years old and uses a walking frame and buggy) –attended a primary school which ran a Foundation provision and which has an established reputation for providing for children with a range of special needs. He took part in all of the activities of the Foundation provision and attended for a full day, after an initial ‘settling in’ period. Billy (10yrs old and a wheel-chair user) attended his local primary for a half a day and was placed in a year 6 class; taking part in the class National Curriculum activities. Charlie (an 8 year old girl and wheel chair user with high dependency (medical) needs) attended her local village school which accommodated her in a year 1 class on Friday afternoons (generally music or art sessions). All three children were accompanied on their placement by two aides. The idea of ‘day or half-day’ placements in mainstream settings hardly reflect Kunc’s models of inclusion. The initial goals of the project were to afford children with pmld social opportunities. The research goals were to explore what these opportunities were and how they impacted on the children with pmld.
The Project obtained Scope/DfES funding for the period 2002 -2005. The research is in 2 stages. At the exploratory stage (September 2002 –July 2003:–reported here), a small-scale qualitative study was undertaken –the aim here was to gain understanding of a complex situation and to derive hypotheses for the final stages of the research (Bayliss and Pratchett, 2003). A series of observations were undertaken, together with a range of semi-structured interviews with key staff (from both the Special and mainstream schools; support staff (TLSA’s) and parents of the 3 children.
All interviews were recorded (following ethical protocols relating to confidentiality and anonymity), transcribed and analysed using AtlasTi qualitative data handling software. A series of ‘themes’ emerged from the data, using Grounded Methods (Glaser and Strauss) which were explored across the data-set.
Documents (IEP records, inclusion diaries, notes from review meetings, correspondence with various parties and field notes) were maintained in an archive and contributed to triangulating the data –serving to illuminate the grounded themes as they emerged from the interview data. The research is ongoing and will be completed in July, 2005.
RESULTS
The results reported are for the exploratory phase of the research (more fully reported in Bayliss, and Pratchett, 2003) and some indications are provided about early outcomes for the explanatory phase.
The exploratory phase (2002-2003).
The qualitative data (semi-structured interviews, field notes, and inclusion diaries) were analysed using AtlasTi software tools. Coding of the data yielded a series of ‘themes’ which were related to the external perspectives of the questions:
The themes presented are: child perspective, inclusion and support; barriers to inclusion and impact on others (citizenship).
All children showed increase behaviour rates with a wide range of behaviour states in the inclusive settings. All the children were awake and attentive when together with peers in the classroom. The inclusive settings provided opportunities for intensive interaction (Hewett and Nind, ref) and acted as ‘responsive environments’ (Ware, 2004) with the social milieu being one of ‘normal interaction, rather than between care-giver and child which characterises special settings.
For Peter and Billy the educational process overall led to gains in academic development (as measured by the Foundation Stage –Early year Goals and P-Scales). It is difficult to determine the effects of the inclusive placements directly (as opposed to the background effects of the special school); the overall outcomes for the children were gains in personal engagement and directed attention –attributed by the personnel and parents to the opportunities afforded by the inclusive placements.
Interview data showed that Peter had made gains in various areas of learning and development, particularly in area of social-emotional development (confidence and anticipation), personal growth and attention skills and persistence (Foundation Stage –early learning Goals). Communication skills did not increase greatly, but there were observed gains in turn-taking skills, greater person/object awareness and tolerance of unfamiliar situations. Peter showed growth in physical mobility and strength. Parents reported child outcomes for both children through greater community involvement, where their children were recognised and greeted by other children within their local communities.
Inclusion is something which didn’t ‘just happen’. The development of the outreach provision depended on the work of the special school in convincing the partner primary schools that such development was desirable, together with the support of the special school. The process was welcomed and wholly supported by parents.
In overview, inclusion is seen as a multifaceted concept which relies heavily on a series of factors:
The qualitative data show very positive support for the concept of inclusion at Peter’s primary school, while Charlie’s experience at her local primary was seen negatively, in that the school did not feel equipped to meet her needs (and even though bridging and aide support was offered, this view did not change and the placement was withdrawn after 2 months). Billy’s experience was seen as ‘intermediate’ in that the experience was seen to be of social benefit but teachers at the school questioned the feasibility of a placement which extended beyond a social process. The placement for Billy was again withdrawn after 4 months, when it was felt that it could not move beyond the ‘social’ and teachers questioned its purpose.
At the Peter’s primary school, the process was seen as a ‘learning curve’ –getting to know Peter and being able to extend the school’s considerable expertise in meeting special educational needs to meeting those of Peter, which challenged the school’s prior experiences.
The data show that benefits accrue for children through increased peer interaction available within an inclusive settings, but that inclusion for children with pmld is dependent upon collaboration between special and mainstream provisions, and that each is not sufficient on their own.
Inclusion is heavily dependent on prior experience and expectations of the mainstream schools. For Charlie, the primary school had had a previous negative experience of a child with cerebral palsy and felt ill-equipped to deal with the needs of highly dependent children. Offering Charlie a ‘social experience’ was seen as beneficial, but the school could not accommodate her complex needs. The school felt ill-trained, ill-experienced and ill-prepared for Charlie –the support offered by the special school was not accepted. For Billy, positive prior experience of the mainstream class teacher provided a basis for allowing Billy access to a mainstream provision. However, difficulties arose in differentiating the curriculum sufficiently to enable Billy an experience which went beyond the ‘merely’ social. That this social experience had benefits for Billy showed the power of social interaction between peers.
All three placements could not have developed without Teaching and Learning Support from the special school, which forms the bridge between special and mainstream settings- the highly specific personal and professional skills and knowledge of learning support delivered by both teachers and aides from the special school were essential to the project. This was recognised by all staff from the primary school, and more importantly, from the parents. Where the inclusive process worked well, Peter’s primary school used the experience as a learning experience and the collaboration between mainstream and special school staff underpinned positive change –the school felt that Peter had become a pupil of the school. Everyone was working to common goals and the development of innovative approaches to meeting Peter’s needs. Where the process for Billy was less successful, the social process was seen as positive, but there was little evidence that the school was developing a common curriculum. Where the process was weak, Charlie’s experience demonstrated that without partnership collaboration, inclusion remains as a social experience only, without a principled approach to meeting complex needs of children with pmld.
The more general basis for inclusion is dependent on teacher knowledge, attitudes, skills and values- the research showed that it is unrealistic for a school to start from ‘scratch’ with children with pmld. Even though the schools were willing, without expertise the process of inclusion does not move beyond a social experience.
However, even if there are strong underpinnings for inclusive processes, a theme of the lack of specialist resources (human and material) was seen as a major barrier to inclusion. The opportunity to change the fabric of the building, or having specialist facilities which did not hinder mobility was seen as crucial. Classroom and curriculum adaptations, where these were available, underpinned a perception that inclusion for children with pmld was feasible; where these were lacking, this led to negative expectations of inclusion. Resources represented physical material, and professional support for schools (manual handling, access to physiotherapy and speech therapy, practical help in adapting the curriculum). All parties, especially the parents, argued for continued partnership between the special and mainstream schools-it was clear that the children could not ‘survive’ without the balanced provision between special an mainstream. Inclusion was not about full-time placement, either in the special or mainstream provision.
For Charlie’s school, resources had to be in place and the expectation was that Charlie would ‘fit in’ (Kunc’s Inclusion Model A); whereas for Peter’s primary school, the experience of inter-agency collaboration, and the close co-operation between the school and the special school, meant a use of existing resources in different ways to meet Peter’s needs (Kunc’s Inclusion Model B), however, the research showed plainly that inclusion is not an issue of resources per se, but is dependent on how resources are used. The collaboration between the special and mainstream provision facilitated this aspect of resourcing. However, this put strain on the specialist LSA resources who provided direct support to the children and supported collaboration between the primary and special Schools.
The benefit of the inclusive process for other children within the mainstream schools was seen as positive and were subsumed under a code family for ‘citizenship’: none of the non-disabled children in the mainstream settings reacted badly to having a child who was seen as different in their midst. ‘Acceptance’ was the norm, but only for Peter did participation in mainstream activities result in engagement.
The process of including a child with significant disabilities brings out the good in others and meet goals of programme of study for PHSE. The special child can become a resource to build a community. The academic needs of children within early learning goals can be met through a series of child outcomes through supporting peer interaction, with the aim of developing one group of children. For the primary school this was seen as an initial state, which fitted the existing school organisation. For change and development, promoting citizenship (and embracing Peter) was seen in the context of a whole school approach and ethos.
Headteacher Prim 1.txt -
He's become much more of the class now, and as it's Wednesday – that's when (Peter) comes in and that's fine. So he's not being ignored, but he's much more part of the group. Children accept very quickly. Once they understand. That's been the bit to get over to the children – that's the bit that we've learnt from the (special school) staff because they have more detailed knowledge of (Peter) and his capabilities, limitations, whatever, so once we've learnt that he's been part of the class basically as much as possible.
The primary school experience for Peter was seen as being overwhelmingly positive. The strong collaboration between the primary and special school provided positive outcomes for him and for the other children within the Foundation Unit at the primary school. The increased level of behavioural rates and states resulting from interactions and responsive settings support Willins et al’s Quality of Life agenda for Peter. He benefited from having emotional and material well-being –the process did not compromise his need for protection and care. The fact that over time, Peter became more tolerant of others and ‘settled in’ to the routine of the primary school demonstrated change and growth, which contributed to a feeling of greater resilience and independence. Inclusion also contributed to his physical well-being/growth and development. Being part of an active environment where cognitive, social and physical demands were made on him through interactions with peers contributed to positive change. The process also contributed to personal development in those curricula areas which formed the focus of his IEP’s. The primary school were clear that a concept of differentiation for Peter could not rely on a single (mainstream) class teacher to accommodate him within a normal range of National Curriculum Key Stages. The concept of Key Stage alone is meaningless for Peter who requires a developmental curriculum. Without bridging between different forms of curricula, the process of supporting inclusive practice would fail. All respondents pointed to the growth in Peter’s social-emotional development engendered through increased interactions with peers. The increased opportunity for interpersonal relationships supported learning and growth in Peter (this area is not well-served by the P-Scales measures of the National Curriculum and is difficult to measure), as well as contributing to a sense of belonging to both school and his local community. The opportunity to take part in ‘ordinary’ activities supported a concept of ‘rights’, but Peter’s rights were balanced by a need to maintain protection for him as a vulnerable child. The model of inclusion undertaken for the project supported Peter through inter-agency collaboration and such a collaboration supports an improving quality of life for him. The outcomes point to an ethical basis for inclusive practice which supports vulnerable children by understanding their needs, through support for, and understanding of, engagement.
The process of inclusion itself demonstrates a ‘bottom-up’, staged approach. Starting with locational integration (Charlie’s experience) which offers functional contact and social contact (Billy’ experience) can have benefits as demonstrated for Billy. But inclusion needs to move beyond integration. For Peter, there was a trend towards identifying him as ‘one of our children’ with the primary school as a move towards ‘terminological integration’ –this had the further outcome of his Statement being changed to ensure continued placement at the primary school over the coming years. Administrative integration is a future goal, as Peter continues to be on roll with the special school.
For Billy and Charlie, the schools did not attempt curricular integration, both children followed a mainstream curriculum which is unsuitable for a child working within an early years framework/pmld curriculum. At Peter’s primary school, the initial access to the curriculum lay with specialist support, but the research showed good evidence of the primary school provision (after ‘they had got to know Peter’) applying the same curriculum framework and long-terms goals for him and for the other children within the Foundation Unit. Here, the ‘gap’ between Peter’s needs and the nature of the Early Years curriculum was narrower, than for Billie and Charlie. The primary school demonstrated psychological/pedagogic integration: all children were instructed together in the same room, at the same time, using the same programme and using a variety of teaching and learning strategies appropriate to both the needs of learners, and the requirements of the task.
The integrational processes were developed over time and were seen as having beneficial outcomes – the ‘driver’ for these outcomes was on the opportunity for peer interaction within the inclusive setting. While it is difficult methodologically to distinguish between foreground (‘inclusive settings’) and background effects (‘the special school’), respondents were clear of the social power of inclusion settings to work holistically, i.e. the inclusive setting is not ‘social’ per se, but operates across all defined areas of need –the increased activity/engagement leads to all kinds of developmental possibilities for children with pmld. The presence of able peers, who interact in real settings, provides developmental opportunities for children with pmld (Peter’s experience). Simply placing children with pmld in inclusive settings with ‘all necessary resources and support’ may be ineffective if those resources and support are inappropriate or inappropriately used (Billy and Charlie’s experience) and does not lead to engagement ( Being-Belonging and Becoming).
The proposal emerging from this research is to support inclusive practice to support the development of intersubjective approaches predicated on peer interaction for children with pmld, within a framework of collaborative practice which underpins a life of quality for children with pmld.
The challenge for this process is to understand how the needs of children like Peter can continue to be supported through the kind of project developed by the special school –especially as he gets older, where the curriculum ‘gap’ will increase. The Foundation provision for Peter proved appropriate and beneficial. As he progresses through different classes (and there is the commitment to ensure a continuing placement for him), the challenges of meeting his needs within a class setting of increasingly diverse needs will increase. This implies that the collaborative processes will need to be strengthened and that the process will affect policy changes at school (both special and mainstream) and LEA level. This is beyond the scope of this stage of the project, but as the project extends over the next year, this will become a major focus for research and evaluation.
For Peter, the project demonstrated, an example of good, innovative inclusion practice which promotes increase quality of life for children with pmld through successful collaboration between mainstream and special school settings and demonstrated that special/ mainstream school partnerships can work together. The project demonstrated that the curriculum cannot be sufficiently differentiated to include pupils with pmld in a mainstream classroom without direct specialist support and collaboration between special and mainstream provisions –and that ‘support’ is not a simple question of resources, but rather what is the quality of support provided and how those resources are used (Aird, 2000) .
The Project provides some evidence that local community-based projects impact on the school and wider environment – Peter was recognised as ‘one of our children’ and was recognised within the wider community. This conforms to the pmld Network’s requirement of visibility and recognition for children with pmld and that a process of collaborative inclusion can provide the impetus for change.
Peter demonstrated (well-)Being in his mainstream placement; he demonstrated Belonging through acceptance and being accepted by his peers and unfamiliar adults; Becoming was pointed to, but not demonstrated –this forms the focus for the next phase of the research. The project also shows (negatively) that where inclusion assumes tokenistic overtones, it is very difficult to show any sense of belonging or the opportunity for Becoming for children with pmld.
More importantly, there were indications of the primary school placement acting as a ‘social and cognitive ecology of interaction’ (Erickson, 1996) –which promotes increased behavioural activity and increased opportunities for contingent responses. ‘The reciprocal and complementary aspects of the organization of immediate social interaction in real time in the classroom’ led to perceptions that Peter was making developmental gains. Certainly, his Mother was clear about the changes in Peter since he had started on the process of engagement with the primary school:
Peter’s Mum: I think the benefits for him are very clear. His social and emotional development is really helped by dealing with children of his own age who see him in the community and .... Especially for Peter being bussed out of his community doesn't necessarily help him all the time. I think it's nice for him to be part of a small community. So really it's all about social and emotional developments. And I also think all the other development, because I think he does watch and see what goes on and I think he's thinking it through and trying hard to be part of what they do . So I think it's really, really important for him, because I think children learn a lot through their peers as well as through teachers. So I think that's quite important - well, mega-important. Benefits for the children, I think - well it brings out the best in them, to be frank. Wherever he goes - he was at nursery before, mainstream nursery now is here at Primary 1 - he makes friends in his own way..... When for example he was at nursery, they did a birthday party for him and it was amazing, all the cards from the number of children. Other children, I think see and recognise that everybody’s different. For most of them it's great, because it realises - especially those who are struggling - that actually there are people who struggle even worse. So I think that's good. I also think even for the teachers, the fact that children like Peter going to school, children sees other children who are possibly worse off than themselves, I think it just helps the teachers as well and how they do. I suppose you could argue that out of the package the teacher gets the worst for having children like Peter in there, but I still think that they do bring in a lot just by being there. It's difficult to list quantifiable ways.
Charlie and Billie are continuing their education within the special school setting. The outreach process continues and both children are offered some access to mainstream settings. The final conclusion to be drawn is that inclusion for children with pmld cannot be ‘universalised’ –the process of supporting ‘engagement’ which leads to growth and development is highly context bound and highly dependent on ‘local’ rather than ‘global’ factors. Each opportunity must be meticulously planned and supported. This raises implications for the nature of support, both systemic and the training of TSLA’s which go beyond models of supporting teaching and learning.
Epilogue
The research identified Peter’s experience as a model of ‘good practice’ and is continuing, focusing on Peter’s continued placement at the primary school. It is concerned with developing appropriate methodologies which can begin to quantify developmental gains for Peter. Peter has changed schools –moving into a maintained special school who have agreed to continue the placement within the primary school. Peter is now attending the primary school in year 1 and has learnt to walk. The final phase of the research project is looking at developmental gains for Peter and closer understanding of the nature of support for him. Early indications show that the inclusive opportunities are acting as ‘social and cognitive ecology of interaction’ which is having developmental effects for him. The early indicators of the research are also reinforcing the complementary aspects of the special and mainstream settings –both are qualitatively different, and both offer different opportunities for Peter.
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(year on year, i.e. these figures are not cumulative and do not represent absolute population figures)
One of my Master’s students uses the term: ‘children and adults with high support needs’ in preference to the label ‘pmld’. The label acts as a marker of professional discourse which acts as a diagnostic category between professionals – an ‘indexial function of language’ (Bhaskar, 1986). In using this term, I do not support its use – however for exposition, I will use the term to avoid confusion.
The term aides here is used in preference to LSA’s, or TSLA’s, in that the aides could also offer medical assistance/manual handling where necessary or appropriate and their activities were not restricted to supporting teaching or learning ).
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