Getting in and staying there: Children with Down syndrome in mainstream schools
Pat Cuckle
The proportion of children with Down syndrome in mainstream schools, compared to special schools, has been increasing over the last decade; this is due both to more children going into mainstream schools at five or six and to more children staying in mainstream schools for increasing lengths of time, not uncommonly throughout their school careers. There are, however, wide variations between Local Education Authorities, which is attributed mainly to differing implementation of inclusion policies. Data is drawn together from a number of sources (both previously published and unpublished) which describe some of the processes which take place in making initial placements in mainstream schools, maintaining those placements and transferring out of mainstream schools. Commitment of staff to meeting children's special needs rather than matters relating to the curriculum seem to be of paramount importance both at home and abroad in successful mainstream placements.
Cuckle P. Getting in and staying there: Children with Down syndrome in mainstream schools. Down Syndrome Research and Practice. 1999;6(2);95-99.
doi:10.3104/reviews.100
Introduction
The Education Acts of 1981 and 1993 have brought about a great change in
including children with all levels of learning difficulties in mainstream
schools. Inclusion of children with statements in mainstream schools has
increased and has been noted by Norwich (1994; 1997). This trend is reflected
for children with Down syndrome (DS), most of whom will have a range of special
educational needs (SEN) and learning difficulties and most of whom will have a
statement. This article discusses factors involved for children entering
mainstream schools and continuing there. It draws together information from a
number of published studies, as well as previously unpublished data; one set of
data from parents in the early 1990s relates to processes involved in school
placements, and the other relates to data from Local Education Authorities
(LEAs) on inclusion policies collected in 1998.
Acquiring a place in mainstream school
A study of over 3,000 children aged five to sixteen
with Down syndrome in England and Wales showed an increase in the proportions
in mainstream schools from about 4% to 38% in the years between 1983 and 1996
(Cuckle, 1997). There
are two reasons for this increase; more have gone into primary school at five
or six years old in recent years and more have stayed in mainstream than
previously. One of the most important factors to emerge from this study was
the great variation in mainstream placements across the country, dramatically
so for those starting school at five and six; the top quarter of LEAs had 67%
or more in mainstream while the lowest quarter had 28% of less. Norwich (1994;
1997) demonstrated similar local variations for all children with statements
of SEN. There was a strong correlation between Norwich's (1997) LEA data and
data on children with Down syndrome (Cuckle,
1997); where LEAs had high proportions of all statemented children in
mainstream schools, they were also likely to mainstream high proportions of
children with DS. As expected, in each LEA the proportions of children with DS
in mainstream were smaller than all children with statements. Booth (1996)
showed that for secondary school age children with DS in eight LEAs the
percentage in mainstream varied between 2.5% and 50%.
In order to explain the local differences found in
Cuckle (1997) and in Norwich (1994; 1997) 12 LEAs with widely varying
proportions of children with DS in mainstream schools were contacted by
telephone. Officers responsible for placements were asked about their LEA's
policies and what role the parents had in initial placements. Without
exception, officers indicated that they had for some time worked towards
mainstreaming children and maintaining placements wherever possible; they also
indicated that they were working towards more inclusion in the light of recent
recommendations (DfEE, 1997).
This was reflected in written policies which were made available for
examination. Since there is no reason to suppose that one group of children is
any different from a group in a neighbouring LEA, it would seem that LEAs have
different ways of interpreting and implementing policies for school
placements, particularly the proviso "wherever possible".
Judgements may be made about ability in placing a
child or there may be special school places to fill if a judgement has been
made that resources are best used by concentrating them in special schools.
Booth (1996) said that there was no single perspective on inclusion over a
number of authorities, there was great variation and there were arbitrary
decisions about whether similarly able children with Down syndrome were on the
roll of a special or a mainstream department of a "devolved special
school" depending on the route they have taken through the system.
Goodey
(1996) suggested that some LEAs have proportionately more places to fill in
special schools than other LEAs and a mainstream placement may depend on how
much the parents protest. Parents can often find great support from parents'
groups in their area. Support groups can be very empowering; a local group may
know which schools are willing to take children, know how to avoid or resist
any difficulties they meet and can lend moral support to parents who feel they
have a difficult task ahead of them.
Much depends on LEA policy; the same child would be
in a mainstream school in, for example, Newham, a highly inclusive borough, (Jordan
and Goodey, 1996) but if s/he moved to another part of the country, would
be likely to be in a special school. In the Netherlands (Scheepstra
et al, 1996) the number of children with Down syndrome in "regular
education" has been growing, and the authors attribute considerable
influence to parental support groups in encouraging parents to seek mainstream
placements; this was also suggested in Cuckle (1997). Some earlier work had
been carried out involving a series of 13 case studies of children aged
between three and twelve in the early 1990s. The study investigated reasons
for choosing a particular type of school, parental satisfaction with the
school attended and the reasons for children transferring to another type of
school. Two of the children were pre-school age, and the parents wanted
mainstream places, one at a denominational school outside the borough. Of the
11 children of school age, one had always been in special school; his parents
thought that given his severe level of learning difficulty combined with other
physical problems, the school was the best choice and were content with his
schooling, particularly activities such as riding and swimming which were on
offer. The remaining 10 of the 11 had started off in mainstream schools and
the main reasons for that choice were that parents thought their language and
social skills would benefit if they were with "ordinary" children -
similar to parents in
Scheepstra et al (1996). Five of the 10 had gone to the
same school as their siblings, but of the other five all parents reported that
they had had to look around a number of schools to find one which would accept
their children. This was again similar to Scheepstra et al (1996) who found
that it was usually the parents' responsibility to find a school willing to
accept their children; parents with children in "regular" schools
were generally more educated than the average and presumably more able to make
a cogent argument for "regular education". Since the early 1990s the
situation for finding a school seems to have changed; when asked about the
process of making placements in a mainstream school, LEA officers (as
described earlier) generally said that they would be driven by parents'
preferences and that most children would go to their local school after
liaising with the school and the LEA officer. Some schools had built up
considerable expertise with children with Down syndrome and if a place was
requested outside the local school, officers would usually liaise and try to
meet the parents' requests. Most children would start off in mainstream
nursery classes with the intention that everyone would "see how it
goes"; with regular reviews the hope would be to maintain a mainstream
place as long as possible. However, in one area, many children attended a
special nursery from the age of two before moving to mainstream nursery and
reception classes at four having been well prepared to cope. In another LEA
the officer said that in the last year or two there had been a number of
requests for special school placements since parents thought that more money
and therefore better resources would be available, although this was not in
line with the LEA's developing inclusion policy. Some LEA officers made the
point that willingness and commitment on the part of the school to accept a
child was very important to the success of a placement. This is reiterated in
Scheepstra et al (1996) whose parents usually entered into a dialogue with the
schools over expectations at the time of placement; the decision to accept the
child generally was made by the staff as a whole.
Maintaining a place in mainstream school
Factors which influence obtaining a mainstream
placement include in which LEA a child lives and how that LEA interprets and
implements its policy inclusion policy. Having been placed in a mainstream
school, what influences whether an individual child stays there? From about
1,000 complete school histories, Cuckle (1997) saw that in recent years more
children with DS had stayed in mainstream schools than previously, however
children did still transfer to special schools most typically around age 9 and
again at eleven or twelve. The study did not address the question of what
contributes to continuing mainstream placements, however there are a few small
studies which contribute some information.
In the early days of mainstream placements, Budgell
(1986) found that although there were a number of children who started in
mainstream in one particular LEA, there was only one who continued to
secondary school. He suggested that younger children were more easily
accommodated in a "child centred" infant classroom than in a more
formal, academically orientated class at an older age. It may be that Key
Stage 1 makes different demands of the child than did infant classes of the
eighties, however the "child centredness" of the KS1 classrooms is
likely still to be an important factor. From the case studies of 13 children
in the early nineties described earlier, the main reasons parents gave for
children transferring from mainstream to special schools were connected with
increasing falling behind in academic progress; both parents and teachers had
felt that the it was becoming more difficult to meet their needs (both
academic and social) in an increasingly "academic" atmosphere. Three
of the parents spoke of considerable pressure to transfer their children to
special schools, for example one child was excluded from school whenever his
support staff was unavailable through sickness or training; the school feared
that if the LEA knew they could accommodate the child without support staff,
then the support will be cut back or withdrawn. The parents found this kind of
periodic exclusion intolerable, and interpreted it as harassment and
insufficient commitment to meeting his needs. Other parents commented that
their children had been placed in mainstream schools, but without a real
commitment on the part of the school to accommodate their needs. They
commented that it seemed more a case that the child has been granted a place
and so must prove to be worthy of it. Children were often placed with a
younger year group and this may have been appropriate at five or six, but not
appropriate later on as children stayed two or more years behind, usually
loosing friends who moved on. Especially if the parents believed their
children were not really gaining anything from being kept behind, this was
sufficiently frustrating for parents to feel pressured into transferring
children to special schools. However, three of the children were in a LEA who
had closed their moderate learning difficulties (MLD) special school places
and these three then had to transfer to a special school in a neighbouring
LEA. Staff in the new school perceived and resented the situation as one of
having "to pick up the pieces of a failed mainstream placement from
another LEA"; not a conducive atmosphere for the child to enter.
There is, of course, a more positive side to
transfer. When some children enter mainstream school the expectation of both
parents and teachers is that they will stay there as long as possible, gaining
a good basic academic and social grounding but by 9 or 10 it will be more
appropriate to transfer to special school where they will gain from more
specialised teaching and facilities. Amongst parents who felt positive about
transfers to special schools (from the 13 case studies above), the facilities
they liked were a higher ratio of staff to pupils, more cooking and practical
skills, teaching of life skills and preparation for work, more access to
swimming and speech therapy and well organised out of school activities such
as brownies, cubs and drama and dance groups which were organised in the
school at a suitable pace for the children.
There are cases where children transfer from special
school to mainstream school later in their school career. When families move
to a new geographical area they may have this opportunity, usually in cases
where the new LEA has a higher proportion in and greater commitment to
inclusive education. Families sometimes are able to move to and deliberately
choose a LEA where they know their child can attend a mainstream school. In
one LEA one of the special schools caters only for children up to 11, and many
then transfer to a specially resourced high school rather than to another
special school (Cunningham
et al, 1998).
If commitment on the part of a school and its staff
is important in acquiring a mainstream place, it seems it is crucial to
maintaining a place through primary and into secondary school. Two children
from the sample of thirteen (described earlier) had remained in mainstream
schools (at the time of the study they were nine and ten) and what was
striking about the parents' descriptions of school life was how they conveyed
a sense of commitment on the part of the school. One was a grant-maintained
denominational school with a policy for integrating all types of special
needs, the other was a school whose entire staff involved themselves in
welcoming and integrating the child; they publicly celebrated this boy's
achievements, for example the camping and first aid skills he gained at Scouts
and his abilities in dance and drama. There are a multitude of individual
accounts of successful placements reported via the periodic magazine for
parents produced by the national Down Syndrome Association. What schools which
provide continuing, successful placements have in common is a strong
commitment to catering for the children's all round development; academic
achievements may not have always be a priority, although there have been
recent reports of young people gaining very impressive passes at GCSE level
and going on to higher qualifications sometimes in school but more often in
Further Education colleges.
In the Netherlands (Scheepstra,
1996) the parents and school staff usually discuss and agree on conditions
to be met for maintaining a place. Conditions included the school's belief
that it has something to offer the child, evidence of the child's continuing
happiness and progress and the teacher having sufficient time to devote to the
rest of the class.
The quality of support available to children (and
normally supplied as part of the statement of SEN) is likely to affect the
success of a placement. In a highly integrating LEA a fundamental change in
support at 8 years old from trained nursery nurses to untrained classroom
assistants affected schools' perceptions of ability to cope, with consequent
transfer to special schools (Lorenz,
1995). Levels of skill and training vary widely; some children will have a
well-trained nursery nurse while others will have a support person with no
special qualifications although training may have been planned for some future
date. Special needs assistants are increasingly receiving training and there
are now specialist publications for them to use (e.g.
Lorenz,
1998). It is important that the curriculum is thoughtfully differentiated
for children with DS, particularly in the area of language with which most
children will experience difficulties (Alton,
1998).
Booth (1996) found, in a small number of case
studies, that a child's performance (and most likely consequent decisions
about maintaining a placement) depended very much on the quality of
interaction with individual teachers in individual lessons. Interestingly,
Scheepstra et al (1996) found that their sample were more likely to be in the
classes of older and, therefore, more experienced teachers. Social as well as
academic factors are clearly important to parents in preferring a mainstream
placement and social disharmony was an important aspect in deciding to
transfer. Sherman (1995) commented that social inclusion takes effort (either
subtle or overt) on the part of the teachers, assistants or carers; it does
not usually occur spontaneously. It can be very easy to look for and find
reasons to reject a special child from a mainstream school. To help make a
placement successful, it usually takes considerable resourcefulness in terms
of underlying attitudes within a school, commitment to staff training and
willingness to have realistic expectations about what the child can achieve.
It makes all the difference if a child is seen as having special needs to be
met rather than a problem to be overcome.
Correspondence
Dr Pat Cuckle, School of Education, University of
Leeds, Leeds, LS2 9JT, UK. Telephone +44 (0)113 233 4581 E-mail
p.m.cuckle@education.leeds.ac.uk
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