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The following paper shall discuss the educational provisions available for students with profound and complex needs. Such individuals have severe cognitive and neurological dysfunctions, which at times are also accompanied by sensory impairments. Their intellectual level cannot be thoroughly assessed. They form a vulnerable group of persons who are in need of constant assistance, even to perform the most basic needs of feeding and personal hygiene (Arthur-Kelly et. al., 2008).
So what should be taught to the members of this group? Is it meaningful to follow the national curriculum? Or should it be modified? What teaching approaches should be used in order to maximise their learning and awareness? Can these approaches be used in ordinary classes? And if so, will it impact negatively on the other non-disabled students? Should they be included in mainstream schools? These are some of the pungent and yet delicate arguments which shall be tackled in the following paragraphs.
A1. What is Inclusive Education?
Article 26, of the Universal Declaration of Human Rights, states that education is a fundamental right of every human being (United Nations, 1948). The right to education is embraced by all since it opens the gates for employment opportunities; enhances the quality of life; gives empowerment to the individual; and promotes equity in society (Peters, 2007).
‘All children should have access to an appropriate education that affords them the opportunity to achieve their personal potential’
Inclusive education refers to the education of special education needs (SEN) students together with their non-disabled peers in mainstream education schools. It values the right of all students to receive ‘quality education with equal opportunities’; whereby they can participate in meaningful learning and hence develop their full potential (Peters, 2007:99). Such schools shift their focus from the concept of disability and work to remove barriers of participation for all students (Barton & Armstrong, 2001 as cited in Ypinazar & Pagliano, 2004).
‘The goal of inclusion is not to erase differences, but to enable all students to belong within an educational community that validates and values their individuality’
(Stainback et. al., 1994)
A primary document which, identified that the way forward to reach education for all is through ‘inclusive education’, was the Salamanca Statement in 1994. It declares that every child is diverse in his or her abilities and is therefore unique. It goes on to say that primarily:
‘Every child has a fundamental right to education, and must be given the opportunity to achieve and maintain an acceptable level of learning ….. Those with special educational needs must have access to regular schools which should accommodate them within a child-centred pedagogy capable of meeting these needs’
(UNESCO, 1994, para 2 pp: viii)
The philosophy of the Salamanca Statement is underpinned by the social model of disability; whereby learning difficulties are not considered as the problem to educational exclusion, but rather that the general education system needs to be responsive to the needs of all students (Peters, 2007).
A2. Historical Overview in the UK
Gone are the days when children with physical and intellectual impairment were labelled as being ‘ineducable’, ‘idiots’, or ‘defective’; and hence segregated away into asylums for ‘imbeciles’ (Pickles, 2004).
The situation started to take a better turn with the 1944 Education Act. It stated that disabled children had the right to receive an education tailored according to their needs, however, this had to be done in special settings; segregated away from their families and the rest of the community (Pickles, 2004).
The Warnock Report in 1978 coined the term ‘special education needs’ (SEN); a term which included all those children who had some type of intellectual and/or physical disabilities. The report was a key point in the history of inclusive education. The 1981 Education Act followed it. Both reports introduced a multi-disciplinary approach; whereby representatives from the Education, Health and Social Services sectors, teamed up in order to draw an accurate profile of the child, such that whenever possible the child was included in mainstream classes. The Act also empowered the parents or guardians in deciding on the type of education provision for their children. This legislation brought about a change in the composition of special schools. More children with mild to moderate needs started to attend mainstream schools, leaving their peers with profound and complex needs segregated in special schools (Pickles, 2004).
Another two reports followed in 1992, in order to review the objectives of the 1981 Education Act. However, the Green paper, Excellence for All Children (DfEE, 1997) and subsequently the White Paper ‘Program for Action’ (DfEE, 1998) were decisive, for these brought about the movement of the majority of SEN students into mainstream schools. The papers also addressed the financial resources of schools; and hence saw to the improved standards in all schools.
A3. Inclusive Education at the turn of the 21st century
The Special Educational Needs and Disability Act in 2001, together with The Special Educational Needs Code of Practice (DfES, 2001) were introduced, and emphasised the importance that local education authorities (LEAs) should conform to the parents’ choice of schooling provision, except when the school:
‘…. is unsuitable to the child’s age, ability, aptitude or special educational needs, or the placement would be incompatible with the efficient education of the other children with whom the child would be educated, or with the efficient use of resources’
The SEN Code of practice coined the idea of Special Educational Needs Co-ordinators (SENCO), in order to work closely with teachers and parents to the best possible educational outcome for the SEN student and drawing up and Individual Educational Plan (IEP).
Removing Barriers to Achievements (DfES, 2004) followed, strengthening inclusive approaches in schools and promoting early intervention programmes. It states that:
‘All teachers should expect to teach children with SEN and all schools should play their part in educating children from their local community, whatever their background or ability’
The policy promotes further use of assessment tools; where at the age of five the child is assessed in order to move on to formal schooling. The assessment is based on the ‘Early Learning Goals’. However these 13 goals are not classified enough to include the progress made by those children with profound and complex needs, who may also have additional sensory impairment. Therefore its ‘inclusive’ nature is very much contested (University of Manchester, 20009).
In 2006, the Report of the Teaching and Learning in 2020 Review Group stressed the importance of personalised learning as the way forward. Personalised learning means:
‘Taking a more structured and responsive approach to each child’s learning, so that all pupils are able to progress, achieve and participate.’
This approach is important for the progress of all student; especially those with SEN and in particular those with profound and complex needs.
Section BB1. Special and Mainstream Schools – Should they join forces?
The perceived divergence between special and mainstream schools should be reduced such that ‘inclusion becomes a shared concept’, and eventually the policies practiced in ordinary schools are adapted as to provide for the collective interests and educational needs of all students (Zelaieta in Armstrong & Moore, 2004:33). At the turn of the century, the government has assigned a new role for special schools; whereby these have to be:
‘outward looking centres of excellence working with their mainstream partners and other special schools to support the development of inclusion.’
Mittler (2000, as cited in Rose & Howley, 2007) believes that the role of special schools in providing educational services for those students with profound and complex needs has been and still is, of extreme importance. Yet, today, it is widely accepted that pupils are referred to special schools only when mainstream schooling does not cater for their educational needs. Improved cooperation between mainstream schools and special schools, has led to partnerships being established in order to help the transition of students from special schools to ordinary schools (Rose & Coles, 2002 as cited in Rose & Howley, 2007). Such collaboration is to the advantage of those teachers in mainstream schools who are willing to learn from the expertise of those who work with students with special educational needs (McLeod, 2001 as cited in Rose & Howley, 2007). As they work closely together there will be more sharing of ideas and resources, ultimately to the benefit of all the students.
The DfES Report of the Special Schools Working Group states that:
‘Special schools have a vast wealth of knowledge, skills and experience which, if harnessed, unlocked and effectively utilised by mainstream schools, can help ensure that inclusion is a success.’
(DfES 2003b: 6 as cited in Cheminais, 2003:4)
As Cheminais puts it, ‘one size will never fit all’ (2003:5). She believes that as long as there is diversity of needs, special schools cannot be all closed down. She looks at ‘inclusion’ from a realistic point of view; one which backs the notion that a small minority of students, usually those with severe and complex disabilities, will always necessitate special educational provisions in particular settings.
B2. To be included, or not to be?
Advocates of inclusion affirm that:
‘the special education system is a key element in the creation and perpetuation of the social oppression of disabled people’
(Barnes, Mercer & Shakespeare 1999:104)
Butterfield and Arthur (1995, as cited in Arthur-Kelly et. al., 2008) stressed the importance that students with profound and complex needs should experience meaningful communication experiences both from their peers and teachers. Such communicative interactions could only be achieved in inclusive settings, whereby non-disabled peers could connect with them. An inclusive classroom could set the grounds for meaningful communication, and it is ‘the best social forum for experiences such as turn-taking, requesting and greeting’ (Arthur-Kelly et. al., 2008:163).
In fact, in his study, Foreman et. al., (2004, as cited in Arthur-Kelly et. al., 2008) concluded that inclusive settings further increase peer interaction and engagements for students with PCLD when compared to those students attending special schools.
Moreover, Ypinazar and Pagliano (2004) retain that the segregation of SEN students in special schools accentuates their ‘disability identity’ and hence the stigma of labelling. However, Knight (1999) argues that stigmatisation will not vanish just by placing a student with PCLD in a regular classroom. Peers need to be taught how to accept their difference and move beyond.
‘Inclusion is far more than just about the location of a child’s school placement’
(DfES, 2004 as cited in Runswick-Cole, 2008:174)
MacKay (2002, as cited in Armstrong and Moore, 2004) believes that there might be cases where inclusion is not always appropriate; especially in the case of those students with severe and complex learning difficulties. When the mainstream school does not meet the needs of the SEN pupil, it would be highly irresponsible to allow the child attend such a school; such a situation leads to the build up of pressure both on the pupil and teachers alike. John MacBeath, a Professor at the University of Cambridge, recently declared that mainstream classes can be ‘a form of abuse’ (BBC News, 2006). He affirms that:
‘Physically sitting in a classroom is not inclusion. Children can be excluded by sitting in a classroom that is not meeting their needs.’
(BBC News, 2006)
And in fact Peters (2007) argues that inclusion is more than just the physical presence; it means flexible curriculum for some students; teachers who are willing and prepared to welcome an array of abilities; and a welcoming school community.
In 2002, Hanafin and her colleagues concluded that mainstream education does not fulfil the concept of inclusion. They feel that mainstream education is set up on ‘a flawed notion of intelligence’ and is crippling the learning process of many students (Hanafin, Shevlin & Flynn, 2002:410). Giving that the national curriculum is primarily based on linguistic and mathematical skills, those students who are not as proficient in these areas are going to find extremely difficult to cope. Whereas, if the formal curriculum had to give further importance to other subjects which do not require such skills, such as art, music and drama; then all learners would benefit. Moreover, learning and assessment depend on the ability to read and write; those students with severe disabilities, whose abilities are undeveloped if not completely absent, are at a disadvantage. As Camiletti (1996) puts it, SEN students ‘constantly have to rely for learning on their weakest resources’ (as cited in Hanafin et. al., 2002:417).
‘Young people with severe/profound intellectual disabilities are often excluded from meaningful participation in mainstream education. As a result they rarely have an opportunity to interact with their non-disabled peers…. and remain an isolated and marginalised group.’
(Shevlin & O’Moore, 2000, as cited in Gibson et. al., 2005:23)
Norwich goes on to say that this issue of student placement and location of provisions is a huge dilemma, especially in the case of students with profound and complex disabilities. If these children are educated in mainstream schools it is very likely that they will not have access to appropriate resources and facilities; if on the other hand they receive their education at special schools it is likely that they will not have meaningful interactions and thus feel excluded by their peers (Norwich 2007a as cited in Norwich 2008).
From his study (2007), Norwich concludes that inclusion can have its negative aspects as well. The study revealed that sometimes severely disabled students are made to feel unwelcome as their peers do not accept them as their friends, with the result that they feel excluded in their own class. Moreover their learning process can also be compromised by lack of teacher training and appropriate resources, as well as poor attitudes from the teachers’ side.
B3. Has inclusion gone too far?
The extent to which inclusion can be implemented still remains debatable. Baroness Warnock (2005) criticised the government for putting children with special educational needs in one scale. There isn’t a single group of children with SEN; every child is an individual with his or her unique learning difficulty, and it is wrong to categorise children with SEN and those without. The term SEN covers a broad spectrum of learning difficulties and needs, which need to be addressed on an individual basis when planning the Individual Educational Programme. The needs of a child with cerebral palsy who is wheelchair bound differ widely from those of a child with Asperger’s syndrome.
Mercer (1997, as cited in Knight, 1999) argues that students with profound and complex disabilities may not benefit from inclusive classrooms, since their need of highly specialised services, such as physiotherapy or speech therapy will not be catered for in regular classes. The lack of such provisions will negatively affect the learning potential of these students. In fact there are situations where inclusion has a counter effect; that of exclusion, since the needs of the child are not being met while in the regular classroom (Knight, 1999). These views are also reflected by some teachers, who when interviewed said:
‘I don’t think it [inclusion] is realistic because a mainstream school doesn’t have facilities to meet their needs and the variety of different things they need like physio, speech and medical needs’
(Simmons & Bayliss, 2007:22)
Baroness Warnock, who coined the idea of inclusive education more than three decades ago, has now criticised the extent to which inclusion policy has been carried. In her report Special Educational Needs: a new look, she criticises the fact that special schools are closing down with the result that students have no choice but to attend a mainstream schools, which fails to meet their needs. She goes on to say that special schools should still play an important and ongoing role in the lives of those students who need special provisions (House of Commons Education and Skills Committee, 2005/6).
Baroness Warnock adds that the concept of ‘inclusion’ has gone too far. She rejects the idea that for effective inclusion all students need to be under the same roof at all times. She believes that students with special educational needs should be included ‘in the common educational enterprise of learning, wherever they learn best’ (Warnock, 2005 as cited in Norwich 2008:137).
This idea is further reinforced by the Centre for the Study of Inclusive Education (CSIE) who accepts the notion that SEN students can spend part of their time outside the regular classroom, as long as it is for a limited period of time and the student is engaged in meaningful learning sessions.
‘Time spent out of the ordinary classroom for appropriate individual or group work on a part time basis is not segregation …. provided it is time limited for a specified purpose.’
(Thomas & Vaughn, 2004:137 as cited in Norwich 2008:137)
Moreover, despite the increasing numbers of SEN students attending mainstream schools and actually doing good progress; in 2004, the Office for Standard in Education (OFSTED) reported that schools in England and Wales still lack the required preparation, skills and resources in order to cater effectively for the needs of SEN students (Rix et.al., 2009). In fact statistics show that while in 1974, 1.3 per cent of the school population attended special schools; in 2004 there was just a slight change in the amount, with 1.1 per cent of the school population still attending special schools (DfES 2006 as cited in Runswick-Cole, 2008). This hints that maybe mainstream schools still leave much to be desired!
B3. Teacher training
The issue of lack of teacher training has been addressed by several scholars. According to Forlin (2001, as cited in Florian, 2008) it is one of the principal barriers to inclusion. Cook and Schirmer tried to identify ‘what is ‘special’ about special education’ (2003 as cited in Florian, 2008:204). In their study they explained that the same teaching methods used with SEN students are as effective when used with students who have no learning difficulties.
Hence, Lewis and Norwich (2005 as cited in Florian, 2008) proposed the idea that teaching approaches should be designed in a ladder-like spectrum from high to low levels, so as to reach all, from the most gifted to the least; rather than designed according to one particular type of learning disability. Moreover, Florian is confident that most of the teachers, irrespective whether they teach in mainstream or special schools, have enough knowledge and skills to teach all children; all they need to do is to have the courage to put their expertise into practice (Florian, 2008).
Florian (2008) looked in depth at the role of teachers as an influential factor in the success of inclusion. Teachers have to be aware that not all students are the same, and therefore it is in their responsibility to ensure that every student is participating in classroom activities. It is very worrying that OFSTED Reports in 2004 showed that teachers are still reluctant to perform the necessary adaptations to the national curriculum to include all learners (as cited in Runswick-Cole, 2008). School observations in mainstream classes conducted by Simmons and Bayliss (2007) confirmed that various teachers struggled to meet the needs of those children with profound and complex disabilities. One teacher clearly stated that:
‘if staff want to learn more, then it’s up to them personally to join a course off their own back – though we don’t have time to do that at the moment’
(Simmons & Bayliss, 2007:21)
In my opinion it all burns down to attitude; teachers need to focus on the potential of children with PMLD rather than on their impairment (Peters, 2007). A study conducted by Higgins and colleagues (2009) showed how one primary school principal felt about her school:
‘there is a family type environment here…. we’ve got the buddy system up and running…. I do something on values at assembly each week…. … the big children also learn [to be inclusive] from the school staff…. that’s how we are here’
(Higgins et. al., 2009:482)
This proves that if the teachers’ attitudes are positive then inclusion is possible. As Hart et. al., (2004) put it:
‘things can change, and change for the better on the basis of what teachers do in the present’
(Hart et. al., 2004 as cited in Florian, 2008:203)
B4. The Role of Parents
Parents usually have the arduous task of having to choose the type of educational provision for their child. Those parents who value socialisation tend to choose mainstream schooling (Duhaney & Salend 2000, as cited in Flewitt & Nindt, 2007); while those who prioritise on academic performance tend to opt for a continuum of services (Palmer et. al., 1998 as cited in Flewitt & Nindt, 2007).
However, a recent study by Flewitt and Nindt (2007) showed that nowadays the prevalence of parents opting to combine both inclusive and special education is increasing steadily. It seems that in the majority of the cases this combination worked very well for the children; and the parents were happy that their child is enjoying healthy peer interaction in the inclusive classroom while at the same time benefit from adequate resources at the special school. One parent said ‘we had no hesitation about combined placement – it just evolved’ (Flewitt & Nind, 2007:434). Yet, some of the parents in the study were concerned about the possibility that this combination would ultimately cause confusion since the child would be attending two different settings.
The choice of combining two educational provisions clearly shows that parents are looking for an ideal situation, and this ‘ideal’ cannot be found in either one of the provisions alone. In their study Flewitt and Nind (2007) found that a common reasoning expressed by parents was:
‘The child would get the best of both worlds. Copying healthy children and mixing with them socially, but also getting pyhsio, and physical support and exercise they needed to improve’
(Flewitt & Nind, 2007:436)
This point is further examined by Zelaieta, where she points out that since ordinary schools are not yet equipped to provide for the needs of all students; some SEN students have to ‘attend two different schools, unlike the rest of the population.’ She proposes that special schools should change their approach, and instead of operating as individual bodies, start working towards an inclusive policy; since, she believes, ultimately these will fade out and ‘mainstream schools [shall] transform themselves into communities for all learners’ (Zelaieta in Armstrong & Moore, 2004:41).
Richard a father to a severely disabled child relates his story:
‘At this stage, we were frightfully keen, realising he was different and so, still trying to include him in the local community… but he was being sort of parked in a corridor and he was actually being quite literally excluded because he was at the [local] primary school. So we started looking at special.’
(As cited in Runswick-Cole, 2008:178)
It is a pity that the reason that drives parents to opt for special schools is one of a sense of exclusion and uncertainty from regular schools. In his study, Runswick-Cole (2008) observed that some parents had to abandon their original premise of sending their children in mainstream schools, due to attitudinal barriers present in the regular educational settings. Parents looked for a welcoming environment where their children could feel fully included, and for some special schools provided such safe and friendly environment.
Setting up educational provisions capable of supporting all learners, including those with disabilities is not an easy task. Educators are expected to respond to student diversity, through a range of educational approaches. New teaching approaches, such as the use of Augmentative and Alternative Communication devices, enabled the effective participation and learning of those students who previously were unable to access the curriculum (Rose & Howley, 2007).
By right every child should have access to mainstream schooling. Choosing whether the child shall attend mainstream or special schools depends on the parents’ preferences and the child’s needs. Students with mild and moderate learning disabilities are increasingly being educated in mainstream schools. Special schools with their supported environment are most often seen as the best option for those with profound and complex needs. There are parents who choose to combine both provisions in order to find the ideal educational setting for their child. James, a boy with cerebral palsy attends a combined setting. He says:
‘If I was born 20 years ago I might not have had the opportunity to go to a mainstream school. I wouldn’t have had the friends I’ve got now, so things have got a lot better, but we have got a long way to go.’
(House of Commons Education and Skills Committee, 2006:37)
Inclusion develops a greater sense of diversity, and helps society in general to learn that despite such differences all individuals have equal rights (Millar & Morton, 2007).
‘…. regular schools with this inclusive orientation are the most effective means of combating discriminatory attitudes, creating welcoming communities , building an inclusive society and achieving education for all.’
(UNESCO, 1994, para 2 pp: ix)
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