An investigation into the experiences of parents and head teachers involved in the integration of primary aged children with Down syndrome into mainstream school
Kate Petley
This study details the results of an investigation into the experiences of parents and head teachers involved in the integration of primary aged children with Down syndrome into mainstream schools. Ten families were involved in the study, each with a child who attended a mainstream primary school within Hampshire. Structured interviews were held with parents (mothers) of each of the ten children and nine of the head teachers in order to gain information about the process of integration and the experiences of those involved. The information elicited by means of these interviews was used to draw up a theoretical `model of good practice' which might facilitate the integration of a pupil with special educational needs into a mainstream school
Petley K. An investigation into the experiences of parents and head teachers involved in the integration of primary aged children with Down syndrome into mainstream school. Down Syndrome Research and Practice. 1994;2(3);91-96.
doi:10.3104/reports.36
Introduction
In the United Kingdom the concept of integration in education began to be
realised during the 1970's and this was reflected in legislation with the
passing of the 1981 Education Act which stated that children with special
educational needs were to be educated in ordinary schools whenever it was
"educationally and economically viable". This was hailed as indicating a
'moral' commitment to the principle of integration and many parents of children
with special educational needs were optimistic that, backed up by the research
findings and predictions, they might reasonably expect that some of their
children would be educated within the mainstream system.
Booth and Statham (1982) documented the experiences of several sets of parents
as they attempted to gain places in mainstream school for their children,
all of whom had Down syndrome. Eventually unit provision was established
(although not by the LEA) with the children spending part of their school
day in mainstream classes. Parents expressed their delight at the progress
made by their children, both academically and socially, and felt that the
children benefited from being with those who were socially and linguistically
more able.
Casey et al. (1989) carried out a longitudinal study examining the cognitive
development and academic attainments of 36 children with Down syndrome over
a period of two years. Eighteen of these children attended mainstream schools
and eighteen were in schools for children with moderate learning difficulties.
The children in mainstream performed better on all the variables measured;
comprehension, expressive language, numeracy, verbal fluency and drawing
and showed a significantly greater gain in mental age.
Sloper et al. (1990) studied the progress of 117 children aged between six
and 14 in different types of specialist and mainstream provision. They found
that children in mainstream schools were likely to have the highest academic
attainments, followed by those in units in mainstream schools, then those
in schools for moderate learning difficulties, and those in schools for
severe learning difficulties, even after the factor of the mental age of
the children in the different types of schools was removed. The researchers
found that staff in mainstream school placed more emphasis on academic skills
in the curriculum, whereas those in special schools stressed self-help,
socialization and language skills. Children in special schools were taught
academic skills but their lower attainment levels may have been due to the
differing importance placed on academic attainment (Lorenz
et al., 1985).
Several other studies have been carried out which indicate that children
with Down syndrome can be educated within the mainstream, providing that
teachers are made aware of the possible strengths and weaknesses that the
child might have such that they can alter their teaching programme (Buckley
and Wood, 1983;
Duffen, 1976;
Piertese
and Treloar, 1981). However the majority of children with Down syndrome
in the UK continue to be educated within special schools and many parents
find that considerable pressure is still placed upon them to accept a place
in a special school for their child.
This study investigated the experiences of a group of parents who chose
mainstream education for their child. Research concentrated on the integration
process from both the perspective of the parents and the head teachers involved.
Table 1. Personnel with whom parents had contact in the pre-school
years.
| PR |
HV |
PT |
P |
DS |
FD |
PH |
ST |
FY |
SW |
| 1 |
+ |
+ |
+ |
- |
- |
- |
- |
- |
- |
| 2 |
+ |
+ |
- |
+ |
+ |
- |
- |
- |
- |
| 3 |
+ |
+ |
- |
- |
- |
+ |
+ |
- |
- |
| 4 |
- |
+ |
+ |
- |
- |
- |
+ |
+ |
- |
| 5 |
- |
+ |
- |
+ |
- |
+ |
+ |
+ |
- |
| 6 |
+ |
- |
+ |
+ |
- |
- |
- |
- |
+ |
| 7 |
+ |
+ |
- |
+ |
- |
+ |
- |
- |
- |
| 8 |
- |
- |
+ |
- |
- |
- |
- |
+ |
- |
| 9 |
- |
+ |
- |
+ |
- |
- |
+ |
- |
+ |
| 10 |
- |
+ |
- |
- |
- |
+ |
+ |
- |
+ |
| Total |
5 |
8 |
4 |
5 |
1 |
4 |
5 |
3 |
3 |
Key to Table 1
PR = Parent
HV = Health Visitor
PT = Portage Teacher
P = Paediatrician
DS = Down's Syndrome Association
FD = Friends
PH = Physiotherapist
ST = Speech Therapist
FY = Family (Other family with child with Down Syndrome)
SW = Social Worker |
Methodology
Aim of the study
The aim of the study was to use the information gained from structured interviews
with parents and head teachers who had experienced the integration of a
child with Down syndrome to produce a theoretical 'model of good practice'
by which the process of integration could be facilitated.
Method of research
Ten children with Down Syndrome who were in Year 1 or Year 2 of a mainstream
school were selected for inclusion within the study.
Structured interviews were held with the mothers (no fathers were able to
be present) of all ten children and nine of the head teachers.
Results
1. Amount of advice regarding school provision offered to parents and head
teachers before child began school
In the early stages of the child's life, parents received advice from several
agencies, the most common of which was Portage. Parents generally rated
that help that they received as valuable but felt strongly that they had
not had enough advice and support in the early years.
Most parents had encountered little obvious resistance to their decision
to send their child to mainstream school although many felt that they had
not been actively encouraged to do so.
Head teachers generally also felt unsupported in terms of both the adequacy
and amount of advice that they were offered before the child entered their
school.
Table 2. Amount of advice received by head teacher before child
entered school.
| Headteacher |
None |
Some |
Lots |
Background |
| 1 |
+ |
- |
- |
- |
| 2 |
- |
+ |
- |
- |
| 3 |
+ |
- |
- |
- |
| 4 |
- |
+ |
- |
+ |
| 5 |
- |
- |
- |
+ |
| 6 |
+ |
- |
- |
- |
| 7 |
- |
+ |
- |
- |
| 8 |
- |
+ |
- |
- |
| 9 |
- |
- |
+ |
- |
| Total |
3 |
4 |
1 |
2 |
2. Amount and adequacy of support received once child began at school
Generally, the amount of advice and support received by parents since their
child had entered school was rated as inadequate. Many of the mothers felt
angry and hurt that they had received so little support, and also that much
of what had been said to them had been negative, stressing difficulties
and limitations that their child might experience.
Head teachers had received limited amounts of advice and support since the
child had been in school. Six of the nine head teachers had received advice
from the Sarah Duffen Centre but no other agency had provided an equivalent
level of support. Had the centre not been in existence, head teachers would
have received very little advice overall. Most of the head teachers interviewed
reported that, apart from when they were approached by the Centre (usually
at the request of the parents) they had had to ask for any support that
they had received.
Figure 1. Adequacy of support received by headteachers.
Table 3. Head teachers' perceptions as to the adequacy of the
advice received.
| Headteacher |
Adequate |
Inadequate |
Ambivalent |
| 1 |
- |
- |
+ |
| 2 |
- |
+ |
- |
| 3 |
- |
+ |
- |
| 4 |
- |
+ |
- |
| 5 |
- |
+ |
- |
| 6 |
- |
+ |
- |
| 7 |
+ |
- |
- |
| 8 |
- |
+ |
- |
| 9 |
+ |
- |
- |
| Total |
2 |
6 |
1 |
3. Additional support allocated to the child in school
There was considerable variation in the amount of additional non-teaching
assistant (NTA) support allocated to the pupils within school (between 19
and 32.5 hours). No simple correlation between the needs of the child and
the amount of support offered existed. The level of support appeared to
be more an indicator of the willingness and ability of the school and parents
to fight for the needs of the child rather than being based on the absolute
level of need.
Most of the parents were happy with the amount of support that had been
eventually allocated to their child in school although many felt bitter
that they had had to push for additional support rather than having it offered
to them.
Most parents were happy with the way in which the support was used, but
there were three mothers who expressed some anxieties. One mother felt that
the NTA was used as a general classroom "dogsbody", cutting paper and vacuuming
etc, rather than working with her child. Two other mothers felt that their
child worked on a 1:1 or apart from the class group too often. Mothers spoke
of finding it difficult to voice any concerns and discuss anxieties as many
felt that their children were somehow "on trial" and that any criticism
they made might be taken as evidence that their child was not coping within
mainstream education.
Head teachers generally felt the additional support allocated to the child
to be adequate although some felt that the child needed additional specialised
teaching which was not provided.
Figure 2: Additional support allocated to pupil in school.
4. Contact between parents and school
The amount of contact that parents and school staff had before the child
entered school varied considerably. In some cases, the child and parents
made only those pre-school visits that would be made by any child about
to begin school, whereas in other cases, special additional arrangements
were made. This appears to depend very much on the ethos and attitude of
the head teacher and school staff. In those schools in which the head teacher
was determined that the child should be treated as normally as possible,
few, if any, extra arrangements were made. However, in those schools in
which the headteacher felt that there would be difficulties to overcome
in integrating a child with special educational needs, additional arrangements
were more likely to be made, in an attempt to reduce possible anxieties
of staff and parents.
In the majority of cases, parents felt that they had had adequate pre-school
contact, although two parents felt that they would have liked to have had
more. The success of this pre-school contact appeared to depend upon the
effectiveness of the communication between school and parents - if the amount
of contact arose as a result of discussion and negotiation, parents and
school staff appeared satisfied. If however, parents felt that the amount
of contact had been imposed upon them, they were more likely to feel dissatisfied.
Both parents and head teachers generally felt that the amount of contact
that they currently had at the time of interview was adequate. This contact
was usually on an informal basis - as the child was dropped off or collected
from school, although there were occasions, such as the annual review, when
formal contact occurred.
Both parents and head teachers felt that regular and frequent contact was
essential, although this need not be on a pre-arranged basis.
5. The role of the educational psychologist in integration
Parents found the role of the educational psychologist generally difficult
to comprehend. Their main criticism was that they felt uninvolved and ignored
by the educational psychologist who they felt made decisions without consulting
with them. Parents complained that the EP:
- Did not inform them when they were coming in to school.
- Could never be reached by telephone.
- Rarely visited the school and, if they did so, often failed to give
advice.
- Assumed the parents had knowledge that they didn't have.
The general opinion was one of immense dissatisfaction with the EP and the
feeling that they had contributed little in terms of support and advice.
The amount of contact that the school had with the educational psychologist
varied considerably from termly to monthly visits. In some cases there was
always some discussion as to the progress being made by the child with Down
syndrome whereas in other cases, the child was only discussed if specific
need arose. Some head teachers feel that this contact was sufficient whilst
others would have liked more. The majority of head teachers found what contact
they had useful, even if they felt the amount that they had was inadequate.
Head teachers felt that there was a definite role for the EP in helping
a child with special educational needs to integrate and outlined some of
the areas in which they felt that the EP could offer assistance. Firstly,
in guiding them through the legal obligations that had to be fulfilled in
order to meet the needs of the child, such as giving guidance as to the
frequency and content of progress reviews etc. Secondly, head teachers felt
that they should be able to look to the EP for guidance as to teaching programmes
and behaviour modification programmes (where necessary) that would be suitable
for the child. Thirdly, schools felt that the EP should visit regularly
in order to reassure school and parents that they were attempting to meet
the needs of the child in the right way.
Figure 3. Amount of contact school has with EP.
Figure 4. Usefulness of the contact with the EP.
6. Response to the integrated child
In the majority of cases, parents reported that their child was totally
accepted by his or her peers. Head teachers tended to have some reservations
about the level of acceptance shown to the child - mothers were more likely
to report that their child had been totally accepted. Two head teachers
acknowledged that the pupils in the class found some aspects of the child's
behaviour difficult to cope with at times and also that their lack of competence
in language (shared to a greater or lesser degree by all the children in
the study) caused difficulties at times.
Both parents and head teachers commented on a tendency to "mollycoddle"
the child with Down syndrome. Whereas parents tended to regard this as evidence
of their child's successful integration and acceptance by their peers, some
head teachers felt that the child had not been accorded the respect that
children usually showed their peers and was treated rather as a plaything.
Two head teachers also commented on the tendency for adults in the school
to mollycoddle the child and single him or her out for extra attention,
or make allowances for that child that would not be made for others. These
head teachers felt that they had had to work hard to try to ensure that
the child was treated in an equivalent manner to his or her peers, thus
fulfilling the goals of integration as they perceived them.
Only two head teachers had had negative comments made by parents of other
children and these had focussed upon the amount of time given to the child
with Down syndrome which parents perceived to be at the expense of their
child.
Figure 5. Parents' response to the integrated pupil.
7. The attitude of the head teacher towards the idea of integration
Most head teachers had felt very positive about the idea of accepting the
child with Down syndrome into their school. Some of the head teachers admitted
that they had assumed that full support would be provided and, realising
now that this was not necessarily the case, felt that they would be more
cautious another time. Having had the child in the school, most head teachers
continued to feel positive and felt that there had been many benefits.
8. Parents' and head teachers' feelings as to the future of the child.
Generally parents felt that their child would remain in mainstream education,
although some highlighted that there might be new difficulties to face as
their child grew older. Most parents rated 'independence' and 'having a
job' as their main aspirations for their child's future. Parents did not
express a wish that their child should develop the same academic abilities
as their peers but concentrated more upon basic self help and simple vocational
skills. Head teachers were less certain than parents in feeling that mainstream
education would be suitable for the child throughout their school career.
They focussed on the increasing disparity that might arise between the abilities
(social and academic) of the child with Down syndrome and his or her peers.
Figure 6. Head teachers feelings both before and after integration.
Figure 7. Head teachers' opinions as to the most appropriate future
school placement for the child
Conclusions
Consolidating the above findings, it is possible to suggest a model of good
practice:
Before the child begins school
Parents should receive comprehensive advice from an early stage. Those in
the medical, educational and welfare professions should be honest with parents
and provide them with fair predictions as to the difficulties that their
child might experience and the abilities that their child might possess.
Advice should be readily available for parents regarding choice of playgroup
and school.
Head teachers and prospective class teachers should be encouraged to visit
the child, both at home and in a play-group or nursery setting, such that
they become familiar with the child and have the opportunity to speak with
the parents and the play-group or nursery staff about the child. Such pre-school
liaison will help to alleviate the understandable anxieties that the class
teacher might have in knowing that a child with special educational needs
is to be entering his or her class.
The amount of support that the child is to receive in school should be clarified
and in place before the child begins school. This reduces the tensions that
arise from staff having to arrange cover so that the child is supported,
or the child not being able to attend school until the support arrives,
by which time the class has settled.
Advice to the school
Schools should also receive advice and support from those with knowledge
and expertise both before and after the child begins school. Such advice
might come from the EP, the occupational therapist, speech therapist or
advisory teacher. Many of the head teacher's anxieties were not as to whether
or not to accept the child into their school but as to whether they could
meet the needs of that child whilst continuing to meet the needs of the
others in the class. Many of these anxieties stem from inexperience and
a lack of confidence, and these anxieties would be minimised if staff were
able to share them with others and receive advice from outside professionals.
Once the child is in school
Both parents and school staff continue to need support once the child has
begun school. Again, support and advice agencies should be on hand to answer
questions, reassure parents and staff and provide advice. This support should
be offered to schools on a regular basis and schools should be made aware
as to whom they should contact if unexpected difficulties arise.
Support staff
Support staff should be clearly aware of their role and the way in which
they are expected to give support to the child. Ideally parents should be
involved in any discussion relating to the role of the support staff, but
if this is not possible, they should be clearly informed as to the way in
which the support staff will work with their child. This would help to alleviate
misunderstandings or dissatisfaction.
Issues regarding the use of support staff should be on the agenda at every
progress review, such that parents feel that they can voice any concerns
in a supportive atmosphere.
Communication
There should be frequent communication between school and parents on both
an informal and formal level. Parents should feel that their opinions are
valued and heard and be kept fully informed as to the progress made by their
child. The amount of formal communication that will take place should be
made explicit at the start of the child's school career, although these
arrangements should be flexible such that they can be adapted according
to need. Schools should always inform parents when their child is to be
seen by any professional from outside school, such as the educational psychologist
or speech therapist.
Role of the educational psychologist
The role of the educational psychologist should be made explicit to parents.
Parents should be notified in advance of any visit that the educational
psychologist is to make to see their child and should also be made aware
of any change of educational psychologist. They should also be involved
in any decision making or discussion involving their child, or if this is
not possible, be informed of it immediately following the event. Educational
psychologists should avoid using jargon or assuming knowledge on the part
of the parents. The issue of inaccessibility on the part of the educational
psychologist needs also to be addressed.
The number and nature of the school visits made by the educational psychologist
should be negotiated and understood by both educational psychologist and
school. Depending upon the needs of the child, the child might be discussed,
albeit briefly, at every meeting, or an arrangement made that the child
will only be discussed when the school deem it necessary. Schools and parents
should not be left with the impression that the child is being ignored.
Preparing others
Head teachers should consider carefully whether they wish to announce the
child's arrival to the parents of the other children in advance. If they
choose not to do so, it must be remembered that some parents might have
anxieties about the effect that a child with such educational needs might
have on the education of their child, and the staff should be prepared to
explain in detail the level of support that the child would receive in order
to alleviate such concerns.
Head teachers might also want to consider discussing the child with the
whole school staff before the child begins school - including lunchtime
supervisors, cleaning staff etc and emphasising the importance of treating
the child as 'normally' as possible - disciplining where necessary and encouraging
the child's independence, rather than being over protective or over attentive.
Much of this will depend upon the ethos of the school and the approach which
the head teacher and parents believe to be appropriate.
Aims of integration
The aims of the mainstream education for the child should also be clearly
stated. If the main aim of the education is that of social development then
this should be understood by both staff and parents. If the emphasis is
on academic as well as social development then this also should be stated.
In this way, all will be working with common aims and the progress made
by the child can be realistically evaluated by parents and staff. If head
teachers feel that the child is in mainstream school mainly to develop academic
skills and are aware that the gap between the pupils and his or her peers
is increasing, they might feel that the placement is no longer suitable.
Parents, however, might feel that their child is still developing in other
skill areas and that therefore the placement is still entirely valid. Unless
this is discussed and re-clarified at regular intervals, this might become
an area of tension, particularly as the pupil gets older.
Conclusion
The study elicited much information relating to the process of integrating
pupils with Down' syndrome into mainstream primary schools. Overall both
parents and head teachers are committed to integration and feel that there
are benefits for both the child concerned and those in the wider school
community encompassing staff, other children and parents.
However the study highlighted inadequacies and dissatisfactions with the
current 'system' which place strain on families and head teachers who are
attempting to provide children with Down syndrome with their entitlement
to a mainstream education. Further research and appropriate action needs
to be undertaken to ensure that children with special educational needs
in mainstream schools have these needs appropriately met.
Acknowledgements
Thanks are due to the families and head teachers who participated in this
study and staff at the Sarah Duffen Centre, University of Portsmouth, and
the University of Southampton.
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