The perspectives of children and young people who have speech, language and communication needs, and their parents
The perspectives of children and young people who have speech, language and communication needs, and their parents
Sue Roulstone1 & Geoff Lindsay2
1 Bristol Speech & Language Therapy Research Unit and the University of the West of England, Bristol
2 Cedar, University of Warwick
This research report was commissioned before the new UK Government took office on 11 May 2010. As a result the content may not reflect current Government policy and may make reference to the Department for Children, Schools and Families (Dcsf) which has now been replaced by the Department for Education (DfE). The views expressed in this report are the authors’ and do not necessarily reflect those of the Department for Education.
Table Of Contents
Executive Summary ...................................................................................................... 3
Children’s perspectives: key issues ........................................................................ 3
Parent perspectives: key Issues ............................................................................. 4
Implications ............................................................................................................. 4
1. Introduction ........................................................................................................... 6
1.1 A word about Slcn ...................................................................................... 7
2. Children’S And Young People’S Perspectives ........................................... 9
2.1 Reduced quality of life ................................................................................... 9
2.2 Room for improvement ................................................................................ 11
2.3 Positive quality of life ................................................................................... 11
2.4 Key issues ................................................................................................... 12
Social acceptance and emotional well-being .................................................... 12
Target setting .................................................................................................... 14
3. Parents’ Perspectives ...................................................................................... 16
3.1 Identification of need ................................................................................... 17
Age of identification ........................................................................................... 18
Early signs of concern ....................................................................................... 18
Needs in school................................................................................................. 19
Diagnostic labels ............................................................................................... 20
3.2 Provision ..................................................................................................... 21
3.3 Outcomes .................................................................................................... 24
3.4 Key Issues................................................................................................... 27
Early identification ............................................................................................. 27
Satisfaction with provision. ................................................................................ 29
Pathways to independence and inclusion ......................................................... 31
4. Conclusions .......................................................................................................... 32
Children’s perspectives: key issues ...................................................................... 33
Parent perspectives: key Issues ........................................................................... 33
Implications ........................................................................................................... 34
References ................................................................................................................... 35
Appendix 1 – Bcrp Reports ....................................................................................... 40
The Better Communication Research Programme (Bcrp) was commissioned as part of the
Better Communication Action Plan1, the government’s response to the Bercow review of
services for children and young people with speech, language and communication needs
(Slcn). This had recommended a programme of research ‘to enhance the evidence base
and inform delivery of better outcomes for children and young people’ (p.50)2. This is one of
four thematic reports which synthesize the findings from the 10 technical reports that report
the results from individual Bcrp projects; there are also two interim reports and a report of
the Bcrp as a whole (see Appendix 1 for full details).
Any attempt to understand how best to configure services and to evaluate their impact must
consider the perspectives of the people in receipt of those services, in this case, the children
and young people with Slcn and their parents. These perspectives have been investigated
within the Bcrp by two key projects - the preferred outcomes study3 and the prospective
study of children with language impairment (Li) and autism spectrum disorders (Asd)4.
This report presents first the children’s perspectives; it covers their self-reported quality of
life which suggests that children with speech, language and communication needs (Slcn)
experience an impoverished quality of life compared to their peers. The report then focuses
on aspects of their lives that children would like to improve and then finally focuses on the
positive aspects of their lives that children reported. We identify two key issues for children
with Slcn.
Children’s perspectives: key issues
Children’s reports of their quality of life suggest that they are particularly vulnerable
regarding social acceptance and emotional well-being.
1 https://www.education.gov.uk/publications/eOrderingDownload/Better_Communication.pdf 2 Bercow, J. (2008) The Bercow Report: A review of services for children and young people (0-19) with speech, language and communication needs. Nottingham: Dcsf. https://www.education.gov.uk/publications/eOrderingDownload/Bercow-Report.pdf 3 Roulstone, S., Coad, J., Ayre, A., Hambley, H., & Lindsay, G. (2012). The preferred outcomes of children with speech, language and communication needs and their parents London: DfE.. 4Dockrell, J., Ricketts, J., Palikara, O., Charman, T., & Lindsay, G. (2012). Profiles of need an provision for children with language impairment and autism spectrum disorders in mainstream schools: A prospective study. London: DfE.
Features of children’s lives that cause enthusiasm and interest were not reflected in
the school targets that they could remember.
The perspectives of parents are presented on the process of early identification, on the
provision experienced by their child and their views on outcomes that they value.
Parent perspectives: key Issues
Parents’ reports of the process of identification showed variability in the age and
process of early identification.
Although many parents were satisfied with provision for their children, there were
marked discrepancies: parents of children with Asd reported that their children
received higher levels of provision and reported higher levels of satisfaction than
parents of children with Li.
Lack of clarity about the use of the term Slcn was also identified as an issue that
may impact upon provision.
There were a number of parents who were not aware of the level of provision that
their child was receiving.
Parents valued outcomes related to the increasing independence and inclusion of
their children and recognised the vital role that communication skills play in the
achievement of these skills. The challenge is to identify the pathway from the
underpinning communication skill to the functional outcome and the evidence-based
interventions that achieve them.
Implications
Practitioners need to check and make themselves aware of the perspectives of
children and young people, particularly in terms of their views on their own social
acceptance and emotional well-being.
Understanding the perspectives of children and young people is also fundamental to
the process of developing relevant, meaningful, functional and motivational targets
that are shared with and by the children and young people.
Parents need easy access to information about developmental indicators of speech,
language and communication development and the factors which practitioners
recognise as cause for concern.
Prospective research is needed to investigate the early concerns of parents to inform
our understanding of the early developmental trajectories of children with Slcn.
Parents need better ongoing information, not just at the time of assessment of
special educational needs, about what is happening with their child, who is seeing
the child, and when.
Parents also need improved information about the evidence underpinning
intervention decisions so that they can be real partners in planning discussions and
can make evidence based choices.
Services should systematically collect evidence of children’s and young people’s
outcomes that can be shared with parents; importantly, the outcome data collected
should reflect the concerns of parents.
Research to investigate the effectiveness of interventions should include measures of
outcomes relating to independence and inclusion.
Since there will be differences of interpretation of the two higher level outcomes
(independence and inclusion) for particular children and young people, an explicit
discussion of the targeted outcomes for any intervention, whether in a practice or
research context, should take place with children and young people and their
parents.
The Better Communication Research Programme (Bcrp) was commissioned as part of the
Better Communication Action Plan5, the government’s response to the Bercow review of
services for children and young people with speech, language and communication needs
(Slcn). This had recommended a programme of research ‘to enhance the evidence base
and inform delivery of better outcomes for children and young people’ (p.50)6. This is one of
four thematic reports which synthesize the findings from the 10 technical reports that report
the results from individual Bcrp projects; there are also two interim reports and a report of
the Bcrp as a whole (see Appendix 1 for full details).
The purpose of the Bcrp was to examine the effectiveness and cost effectiveness of
provision for children with Slcn and to identify good practice. Any attempt to understand
how best to configure services and to evaluate their impact must consider the perspectives
of the people in receipt of those services, in this case, the children and young people with
Slcn and their parents. These perspectives have been present in Bcrp in the form of
projects and programmes of work, questions within projects, and through the advice
received by the project team through its advisory board.
This report brings together the findings from two key projects within the Bcrp that
specifically set out to investigate the perspectives of parents and children - the preferred
outcomes study7 and the prospective study of children with language impairment (Li) and
autism spectrum disorders (Asd)8. These findings are discussed in the light of the broader
literature and in the light of findings from other Bcrp projects. Throughout the work carried
out to complete this report, we have worked closely with Afasic9 to identify the key findings of
particular relevance to parents, their children and young people with Slcn.
The ‘preferred outcomes’ study consisted of 5 linked projects starting with focus groups for
parents and workshops for children to explore their views on outcomes that are valued for
5 https://www.education.gov.uk/publications/eOrderingDownload/Better_Communication.pdf 6 Bercow, J. (2008) The Bercow Report: A review of services for children and young people (0-19) with speech, language and communication needs. Nottingham: Dcsf. https://www.education.gov.uk/publications/eOrderingDownload/Bercow-Report.pdf 7 Roulstone, S., Coad, J., Ayre, A., Hambley, H., & Lindsay, G. (2012). The preferred outcomes of children with speech, language and communication needs and their parents. London: DfE 8 Dockrell, J., Ricketts, J., Palikara, O., Charman, T., & Lindsay, G. (2012). Profiles of need and provision for children with language impairment and autism spectrum disorders in mainstream schools: A prospective study. London: DfE. 9 Afasic is the national (UK) organisation for families of children and young people with speech, language and communication needs.
the children. This was followed by a survey of parents’ views on the themes that had
emerged from the qualitative work. We then carried out a systematic review of self- and
parent-report tools to investigate whether or not the outcomes identified so far were
represented in any existing instruments to measure children’s quality of life. The findings of
these four projects are described in detail in the ‘preferred outcomes’ report10. Finally we
developed a short questionnaire for parents that focused on the attitudes and behaviour of
other people towards their child. Some preliminary findings from this questionnaire, which
was piloted with parents participating in the prospective study, are included in this report.
As part of the prospective study of children with language impairment (Li) and autism
spectrum disorder (Asd)11, parents of the participating children were interviewed using a
semi-structured telephone interview to examine their understanding of the needs of their
child and how those needs were being met in school. The children in this study completed a
quality of life questionnaire.
All the projects completed as part of the Better Communication Research Project are listed
in Appendix I. They are referred to as appropriate in the discussions and referenced
accordingly.
This report addresses parents’ and children’s perspectives separately. We know from quality
of life studies that, not only do parents and professionals differ in their views about a child’s
quality of life, so do parents and their children12. It is therefore important to value the child’s
perspective in its own right. We start with the children’s perspectives on their quality of life
and features of their lives that they value or could be improved. The report then considers
the parents’ perspectives in terms of their perceptions of their children’s needs, the
interventions they receive and the outcomes that they value.
1.1 A word about Slcn
Slcn is the acronym for ‘speech, language and communication needs’. This term was first
coined by the Bercow report as a way of referring to all children with difficulties and needs in
the area of speech language and communication. In that report it was used to include
children with a range of medical diagnoses and special educational needs in recognition of
10 Roulstone, Coad, et al. (2012) ibid 11Dockrell, et al. (2012) ibid. 12 Jokovic, A., Locker, D. & Guyatt, G. (2004). How well do parents know their children? Implications for proxy reporting of child health-related quality of life. Quality of Life Research, 13(7), 1297-1307.
the impact they have on a child’s developing speech, language and communication. It can
therefore be used with reference to children who have difficulties in the area of speech,
language and communication in the absence or presence of other conditions. So in the way
that the term is used in the Bercow report, Slcn can include children with learning
difficulties, hearing impairment, Asd, physical difficulties, stammering, as well as specific
speech sound and language impairments that exist in the absence of other developmental
conditions. The acronym is now used extensively in the practice, policy and research
literature in the UK although not in the rest of the world.
The term is also used in a more specific way by the Department for Education (DfE) for
England to classify children’s special educational needs – see the SEN Code of Practice13.
In that particular context, Slcn refers to children whose primary educational need is in
speech, language and or communication. This is the system used for the collection of
national data through the School Census. The use of the Slcn category in this way does
not differentiate between children with different types of speech, language and
communication need (such as specific language impairment or stammering or speech sound
disorder), the emphasis being on their related educational need. On the other hand, this use
of Slcn excludes children whose primary special educational need falls within a different
category, including hearing impairment and severe learning difficulties. Speech, language
and communication needs are grouped with the separate category of Asd within a
superordinate category of Communication and Interaction Needs. The different use of this
term has been discussed on previous occasions14 and is picked up again in other Bcrp
themed reports15. In this report Slcn is used in the broader meaning as an overarching and
inclusive category. References to other Bcrp reports are given as footnotes.
13 DfES (2001). Special educational needs: Code of practice. https://www.education.gov.uk/publications/standard/publicationDetail/Page1/DfES%200581%202001 14 Lindsay, G., Desforges, M., Dockrell, J., Law, J., Peacey, N. & Beecham, J. (2008). Effective and efficient use of resources in services for children and young people with speech, language and communication needs. Department for Children, School and Families: Research Report DCSF- RW053 https://www.education.gov.uk/publications/standard/publicationDetail/Page1/DCSF-RW053 15 Dockrell, J., Ricketts, J. & Lindsay, G. (2012). Understanding speech, language and communication needs: Profiles of need and provision. London: DfE.
In the past, it was assumed that children were unable to express their views or that
somehow these were not legitimate. They were only children after all and unable to
understand the adult world. If we wanted to find out about children’s speech, language and
communication, we observed them, tested them or asked their parents. This has changed
over the last few decades and there is now an acceptance that the views of children and
young people are important in their own right. Children’s right to be heard in the decisions
that affect them was enshrined in the United Nations Convention on the Rights of the Child
in 1989 which gave children a right to freedom of expression (article 13) and a right to have
their views heard in decisions that affect them (article 12)16. In the field of speech, language
and communication needs (Slcn), research into children’s perspectives is becoming more
prevalent and there is an acceptance that children’s views are taken into account17. Listening
to the perspectives of children and young people can be a complex process since the very
nature of their Slcn makes it more challenging for them to participate in such bodies as
children’s councils. Nonetheless, there are a range of resources now available to support
this kind of engagement with children and young people18.
Children’s perspectives were therefore considered to be important to this research
programme as a matter of principle since the research was about them; it was felt that their
voice should be used to ground some of the findings in the reality of what matters to the
children and young people themselves. In particular, we wanted to gain an insight into their
perceived quality of life as compared to their peers and to explore this in more detail in terms
of the things they consider to be good in their lives and the things they wanted to improve.
2.1 Reduced quality of life
The children in the prospective study in Years 3, 5 and 7 completed the Kidscreen at the
start of the study and again approximately 18 months later. Kidscreen is a self-report
instrument for children and has ten subscales: physical well-being, psychological well-being,
moods and emotions, self-perception, autonomy, parent relations and home life, financial
16 Unicef. (1989). The United Nations convention on the rights of the child (Uncrc). http://www.unicef.org/crc/ 17 Roulstone, S. & McLeod, S. (2011). Listening to children and young people with speech, language and communication needs. Guildford: J&R Press 18 For example: Kirby, P., Lanyon, C., Cronin, K. & Sinclair, R. (2003). Building a culture of participation: involving children and young people in policy, service planning, delivery and evaluation. Handbook. Nottingham: Department for Education and Skills and the National Children’s Bureau. https://www.education.gov.uk/publications//eOrderingDownload/DfES-0827-2003.pdf.pdf
resources, social support and peers, school environment and finally, social acceptance. At
the start of the study, the mean scores of children with Asd were significantly lower than the
means of the normative sample on all subscales, showing that their perceptions of their own
quality of life was below that experienced by the average child. In contrast, the children with
Li were within the average range of the normative sample on most scores except for moods
and emotion and for social acceptance/bullying where they did not differ significantly from
the children who had Asd. These two domains receive the lowest ratings from all the
children. At the follow-up assessment, both groups of children had improved scores on
moods and emotions, self-perception and social acceptance subscales although the moods
and emotion and social acceptance scales still received the lowest scores from the children.
So to summarise, according to their scores on this self-report instrument, children with Li
experienced a reduced quality of life in terms of their moods and emotions and their social
acceptance compared to their peers; children who had Asd experienced a reduced quality
of life across all the dimensions.
Children who attended the ‘preferred outcomes’ workshops had a range of Slcn including
those who needs were primarily and specifically speech, language and communication. In
the workshops, the themes that emerged from the data have some resonance with domains
in Kidscreen. They talked about their moods and feelings, about their parents and home
life, about the people who support them and their friends, about the school environment and
about social acceptance and bullying. The analysis completed as part of the systematic
review of quality of life measures19 concluded that Kidscreen had a good fit with the
themes emerging from the children’s and parents’ data, although there were gaps, including
communication, inclusion, independence, staying safe, coping with change and a number of
aspects of other people’s behaviours towards them, such as listening, understanding,
accepting and adapting, and not shouting.
Evaluating the quality of life of children with developmental conditions can be tricky since
typically, they have no experience beyond their own lives and therefore potentially have no
means of comparison with what life might be like without special educational needs or a
disability. There is therefore the possibility that children rate themselves as having a higher
quality of life than would adults around them who observe their interactions with the world.
Nonetheless, the findings from the Kidscreen appear to be sensitive to the difficulties
experienced by the children in the Bcrp and to differences between children with different
19 Roulstone, Coad, et al. (2012) ibid.
types of Slcn. Furthermore, those domains of Kidscreen that were problematic for the
children in the prospective study are similar to those identified as difficult by the children in
the workshops. For example, children told stories of being teased or bullied by other
children. They also talked about their feelings of frustration, anger and sadness. Sometimes
this was in relation to others because of how people were behaving towards them but
sometimes it was in relation to their own performance - “ I get cross with myself. Just myself
that I can’t do it.” Children in the workshops also talked about aspects of their school life
which were a struggle for them. These included sports and social aspects as well as
academic subjects and the process of learning such as memory, concentration and
organisation.
2.2 Room for improvement
The data from the workshops also showed that there were aspects of the children’s life that
they wanted to improve. In particular, children hoped for changes in how other people
interacted with them, for example, they wanted other people to listen to them, not to interrupt
and to talk without shouting20. This included family and friends as well as teachers. Aspects
of their own abilities were also things that they wanted to improve, such as their talking,
maths and reading. Some children could list their targets at school - “remember people’s
names, remember teachers’ names, sit up straight, stop making silly noises” - but to a
greater extent, were not particularly enthusiastic to talk about them. They raised these only
when asked directly and there seemed to be a discrepancy between the areas in which
children would like to see change and the targets that they could remember.
2.3 Positive quality of life
One should not assume from the preceding sections that these children were altogether
unhappy. During the workshops, the children shared aspects of their life that they perceived
to be good. The children talked positively about their families, their pets, their hobbies and
their friends. Children indicated the high value they attach to having fun and talked about
events and activities they enjoyed, and people who joke with them and make them laugh.
They identified things that they were good at, such as playing darts, being kind, being good
at reading and talking nicely. Finally they talked about the people around them who provide
support; they named members of their family but also talked about their teachers, speech
and language therapists (SLTs) and friends.
20 This reference to shouting did not seem to be in terms of people telling children off, but in terms of people shouting in an attempt to communicate – as if people assume that saying something louder would help the child to understand.
2.4 Key issues
From the children’s perspectives, two issues stand out as important: first, the children’s
perception of poor quality of life, in terms of their moods and emotions and social
acceptance; and second the link between their current targets and what made them feel
positive about life.
Social acceptance and emotional well-being
Within the Bcrp projects, children and young people with a range of Slcn talked about
being teased and bullied and excluded by their peers; they also talked about their own
feelings of frustration and sadness. On the Kidscreen measure, the quality of life
dimensions of social acceptance and moods and emotion showed poor levels for both Li and
Asd children relative to the normative sample. They talked about the importance of their
friends, being happy and having fun. These issues are clearly linked to some degree in that
a child’s emotional well-being can be affected by the presence of bullying and victimisation.
Gini & Pozzoli21, in a meta-analysis across 11 studies, found that children who had been
victimised were twice as likely to show problems such as headache, backache, abdominal
pain, sleeping problems, poor appetite, and bed-wetting. Most of the studies included in this
analysis were retrospective in design, but similar findings were also evident in a large
prospective study of young people aged 13-14 years (N = 2680); this found that the
incidence of self reported symptoms of anxiety and depression was significantly associated
with reports of victimisation in the preceding year22. These two studies do not identify the
particular risks for children with Slcn, and one cannot assume that the magnitude of risk
will be the same; however, the studies do highlight the potential negative impact of
victimisation on a child’s emotional well-being.
All children will want to be free of bullying or social exclusion. The literature has mixed
results about whether or not children with Slcn in particular are bullied. The samples and
methods used vary, so it is not always possible to reconcile the differences; there is more
consensus regarding perceptions of social acceptance and studies suggest elevated levels
of social exclusion in children with Slcn.
21 Gini, G. & Pozzoli, T. (2009). Association between bullying and psychosomatic problems: a meta- analysis. Pediatrics, 123(3), 1059 -1065. 22 Bond, L., Carlin, J.B. Tomas, L., Rubin, K. & Patton, G. (2001). Does bullying cause emotional problems? A prospective study of young teenagers. British Medical Journal, 323, 480-484.
A recent systematic review of bullying23 concluded that children with special educational
needs and/or disabilities (SEND) are significantly more likely to be the subject of bullying or
victimisation. They identified a number of factors that were related to bullying and
victimisation including academic difficulties, low self esteem and anxiety, differences in
physical attributes, shyness and submissiveness, uncooperative or aggressive behaviour,
language and communication difficulties, inappropriate social behaviour and low social
status. Sweeting and West24, found that teasing and bullying were more commonly reported
by children who were less physically attractive, overweight, had a disability such as a sight,
hearing or speech problem, and performed poorly at school; they also reported that the
associations were independent and therefore cumulative in their effects.
It is important to understand that these are associations and risk factors: they are not
necessarily causative and do not mean that every child with Slcn will experience bullying.
For example Lindsay et al.25 found no statistically significant differences in the levels of
physical or verbal bullying reported by children with specific speech and language difficulties
and two comparison groups who were from the same school class – a group of typically
developing children and a group with non-language based special educational needs.
Children were aged 12 years and in Year 7 at school. Savage26 reports a small scale study
where 6 children in a language resource base (Lrb) were compared to their 54 mainstream
peers. As with Lindsay et al., not all the children with Slcn reported bullying, although it was
a major concern for a proportion of the children.
Understanding the particular conditions that are associated with bullying and social exclusion
is therefore important. Savage suggests that the inclusiveness of the educational placement
might determine the level of bullying that occurs although it was not possible to test in his
study. A recent study by Laws and Bates27 supports this idea to some extent. This study
shows a reduction in negative attributions to children with Slcn attending a Lrb when the
23 Byers, R., McLaughlin, C. & Peppin-Vaughan, R. (2012). The research perspective: vulnerability and prevalence. In C. McLaughlin, R. Byers, & C. Oliver, (Eds) Perspectives on bullying and difference: supporting young people with special educational needs and/or disabilities in schools. London: National Children’s Bureau. 24 Sweeting, H. & West, P. (2001). Being different: correlates of the experience of teasing and bullying at age 11. Research Papers in Education, 16(3), 225-246. 25 Lindsay, G., Dockrell, J.E. & Mackie, C. (2007). Vulnerability to bullying in children with a history of specific speech and language difficulties. European Journal of Special Needs Education, 23(1), 1-16. 26 Savage, R. (2005). Friendship and bullying patterns in children attending a language base in a mainstream school. Educational Psychology in Practice: Theory, Research and Practice in Educational Psychology, 21(1), 23-36. 27 Laws, G.& Bates, G., (in press) peer acceptance of children with language and communication impairments in a mainstream primary school: associations with type of language difficulty, problem behaviours and a change in placement organisation. Child Language Teaching and Therapy.
school organisation changed to site the children within their relevant mainstream classes for
most activities and withdraw for special support (as opposed to the previous arrangement in
which children were placed in the Lrb and then included in mainstream for particular
activities). However, Knox and Conti-Ramsden28 found no differences in the level of bullying
between children with Sli who were attending a special school and those attending a
mainstream school.
Over several years there has been an increasing emphasis in schools on children’s personal
and social well-being and on developing anti-bullying policies29. These policies are designed,
at a universal level, to be applicable to all children although they do draw attention to the
possibility that children with special educational needs are particularly vulnerable. School
improvement in the personal, social and emotional health of their pupils is captured in the
‘Healthy Schools’ status, whereby ‘Healthy Schools’ must demonstrate that children and
young people, including those who are ‘less vocal and visible’, are given opportunities to air
their views30. Given the perspectives of the children with a range of Slcn in this study,
schools should ensure that these conversations cover pupils with Slcn and the issues of
social acceptance and emotional well-being.
Target setting
The Lamb Inquiry31 recommended that children’s outcomes should be at the heart of the
system of defining children’s special educational needs. However, the setting of realistic,
achievable and highly motivational targets that reflect children’s views is challenging.
Judging by their reactions, the targets mentioned by children in the workshops were
perceived as boring if not irrelevant to their own aspirations and interests. Whilst they might
be targets that are perceived by staff to be a necessary stage in the children’s learning, there
was no sense that these were shared goals or goals that the children had identified as
meaningful. One recent approach to target setting with pupils with special educational needs
28 Knox, E. & Conti-Ramsden, G. (2003). Bullying risks of 11 year-old children with specific language impairment (Sli): does school placement matter? International Journal of Language and Communication Disorders, 38(1), 1-12. 29 Nice (2008). Promoting children’s social and emotional well-being in primary education. Nice public health guidance 12. London: National Institute for Health and Clinical Excellence. 30 Department of Health. (2005). National healthy schools status: a guide for schools. London: Tso http://www.uclan.ac.uk/schools/school_of_health/research_projects/hsu/files/national_healthy_school s_status_guide.pdf 31 Lamb, B. (2009) The Lamb Inquiry. Special educational needs and parental confidence. Nottingham: Department for Children, Schools and Families. https://www.education.gov.uk/publications/standard/publicationDetail/Page1/DCSF-01143-2009
and disabilities reports positive impact on the progress of pupils. ‘Achievement for All’32 aims
to support learners with SEND to fulfil their potential and as such emphasise appropriate
goal setting. The approach used in the project involves listening to the views of pupils as part
of the target setting process. The result is often innovative and unusual but breaks the mould
of boring and unmotivating targets, for example, one school offered hairdressing lessons first
thing in the morning to deal with late arrival for the school day. Another school used the
‘circle of friends’ process to support the reduction in social isolation that subsequently
improved a boy’s behaviour. Key to the approach is process of listening to the perspectives
of the children and young people.
32 Humphrey, N. & Squires, G. (2011) Achievement for all: National evaluation: Final Report. DfE- RR123 https://www.education.gov.uk/publications/Rsg/AllRsgPublications/Page1/DFE-RR123
3. Parents’ Perspectives
Parental involvement in the decisions that affect their children is an accepted, indeed
required process. In an education context, two different aspects of parental involvement are
of importance33: the first is where parents get involved in events in the life of their child’s
school such as helping out in the classroom and joining the parent teacher association; the
second is where a parent supports their child at home with school related work, such as
listening to them read, helping with homework and projects. This latter type of involvement
has been found to be associated with educational benefits for the children34.
In the context of interventions led by SLTs for children with Slcn, the role that parents can
play has evolved over the years from an expert model with very limited involvement of
parents to a more collaborative practice which engages the entire family35. Watts Pappas et
al.34 point out that although historical models are now regarded as out-dated and not to be
recommended, they are still evident in practice, not least in the research literature which
evaluates the efficacy of interventions that are delivered by the Slt alone or with the
‘parent-as-therapist aide’. Changes in practice have been stimulated by research into
parents’ opinions which has evidenced dissatisfaction where parents’ opinions are not
valued. Furthermore, the advent of outcomes based commissioning has brought an interest
in the opinions of parents regarding the impact of interventions.
This section focuses on the two key projects within Bcrp that investigate the perspectives
of parents: one was a project to investigate parents’ views regarding the outcomes that they
value for their children; the second study was part of the prospective study of children with
Li and Asd and used a telephone survey to investigate parents’ understanding of the needs
of the child and how they were being met in school.
33 Department for Children, Schools and Families. (2008) The impact of parental involvement on children’s education. Nottingham: Dcsf https://www.education.gov.uk/publications/standard/Childrenandfamilies/Page9/DCSF-00924-2008 34 Harris, A. & Goodall, J. (2007) Engaging parents in raising achievement: Do parents know they matter? Dcsf Research report RW004. https://www.education.gov.uk/publications/Rsg/publicationDetail/Page1/DCSF- RW004#downloadableparts 35 Watts Pappas, N. & McLeod, S. (2009). Working with families in speech-language pathology. San Diego: Plural Publishing.
3.1 Identification of need
In the consultations that were held as part of the Bercow review36, parents reported that the
process of identification of their child’s needs had been variable: in some cases it had
progressed smoothly but in others parents felt that their concerns were not taken seriously.
This had been a common theme emerging out of previous research where they report
difficulty in persuading people to take their concerns seriously37,38,39 . Rannard et al40 for
example, found that an average of two years went by between parents noticing that
something was wrong and getting any support, mostly because whoever they talked to about
their concerns did not refer them on for assessment.
Despite parents’ concerns about not being heard, there is consensus in the literature, in
policy documents and in policy initiatives that early identification of children with Slcn is an
imperative that should be embraced41.
In the prospective study42, the process of how a child’s difficulties came to light varied in
three ways: firstly in terms of who first noticed the problem, secondly at what age this
occurred and thirdly in terms of what behaviours triggered the concern. In most cases, the
child’s parents had been the first to raise concerns. Health visitors, playgroup leaders and
nursery staff accounted for a small percentage of those raising concerns in the younger age
groups; other members of the family such as grandparents had also been the first to raise
concerns in a small number of cases. This pattern is similar to that found by other studies43.
Only one parent reported that she had been told that their child was likely to grow out of their
difficulties.
36 Bercow, J. (2008) The Bercow Report: A review of services for children and young people (0-19) with speech, language and communication needs. Nottingham: Dcsf. https://www.education.gov.uk/publications/eOrderingDownload/Bercow-Report.pdf 37 Glogowska, M. & Campbell, R. (2004). Parental views of surveillance for early speech and language difficulties. Children and Society, 18, 266-277. 38 Lindsay, G. & Dockrell, J. (2004). Whose job is it?; parents’ concerns about the needs of their children with language problems. Journal of Special Education, 37, 225-235. 39 Rannard, A., Lyons, C. & Glenn, S. (2004). Children with specific language impairment: parental; accounts of the early years. Journal of Child Health Care. 8(2), 165-176. 40 Rannard et al, ibid. 41 Field, F. (2010). The foundation years: preventing poor children becoming poor adults. The report of the independent review on poverty and life chances. London: Cabinet Office http://webarchive.nationalarchives.gov.uk/20110120090128/http:/povertyreview.independent.gov.uk/ media/20254/poverty-report.pdf 42 Dockrell, J., Ricketts, J., Palikara, O., Charman, T., & Lindsay, G. (2012). Profiles of need and provision for children with language impairment and autism spectrum disorders in mainstream schools: A prospective study. London: DfE. 43 Rannard et al, ibid.
Age of identification
In terms of the age at which the children were identified, concerns had been expressed
before the age of 30 months in about half of the children (51%) and between 30 months and
5 years in approximately 34%, with about 15% of parents reporting this occurred 5 plus. In a
study of children who attended a language unit, the parents of all 28 children had noticed
problems before the age of 42 months44. A study of referrals to a Slt service in the north of
England showed that of all childhood referrals, 26% were referred to the service over the
age of 5 years over a 15 month period: approximately 28% of children referred were under
the age of 3 years and approximately 46% were referred between the ages of 3-5 years45.
Although it is difficult to equate the age at which parents noticed their child’s problems in one
study with the age of which referrals are made in a completely different study, there is the
suggestion that the delay noted by Rannard et al is not unusual in that higher proportions of
parents are noticing their child’s difficulties under the age of three than are actually getting
through to referral at this age.
Early signs of concern
In terms of the initial signs that parents in the prospective study reported, these differed
between parents of children with language impairment (Li) and children with autism
spectrum disorder (Asd). In the former, parents were more likely to refer to delays in the
child’s speech and language; although parents of children with Asd also referred to delays
in learning to talk, they referred to a much wider range of behaviours that had caused
concern including unhappy and clingy children, screaming and rocking, lack of eye contact
and engagement with baby games. A number of parents from both groups also remarked
that their child had been a placid or quiet baby. Some parents observed that their child was
different (compared to siblings or other children); others, particularly parents of children with
Asd, commented that they knew that something was wrong although they did not know
what.
Once again, these findings are similar to Rannard et al46 although in that case parents of
those children with specific language impairment were also keen to emphasise the ‘normal’
cognitive ability of their children and the fact that the speech and language stood out as the
problem rather than there being a more general developmental delay; the focus was
particularly on the children’s speech and intelligibility although parents did also mention the
children’s tantrums.
44 Rannard et al, ibid. 45 Broomfield, J. & Dodd, B. (2004). Children with speech and language disability: caseload characteristics. International Journal of Language and Communication Disorders. 39(3), 303-324. 46 Rannard et al, ibid
Needs in school
Parents in the prospective study identified three areas of need in their children who were
attending mainstream schools: speech and language difficulties, academic skills and social
communication / behaviour. Parents of children from both Li and Asd groups mentioned
difficulties in all three areas but, as with their initial concerns, the emphasis varied. So, as
one might expect given the characteristics of the children, parents of children with Li were
more likely to mention their difficulties with speech and language whereas parents of
children who have Asd more commonly mentioned social communication difficulties. When
talking about speech and language difficulties, parents mentioned pronunciation and
intelligibility, use of sentences, the child’s need for sign language.
In terms of academic skills, parents primarily talked about difficulties with aspects of literacy
including reading, spelling, writing and ‘putting things on paper’. However, some parents also
mentioned other academic and learning skills such as maths, processing information,
concentration and memory.
Finally parents mentioned children’s difficulties with social communication and behaviour.
These focused on problems with peers, understanding school rules, personal space. Only
three parents mentioned conduct problems and these difficulties were linked to the child’s
frustration.
The aim must always be to identify a child’s needs before they enter school. In so doing,
there is a chance for early interventions to have an impact on the child’s emerging speech
and language before they have to deal with the social and academic demands on their
emerging speech, language and communication skills. Also for those children who will need
support in school, early identification enables this to be in place as the child enters school
rather than waiting till they fail in school. However, for those children that do arrive at school
with speech, language and communication difficulties, early years practitioners need a
robust mechanism to identify those children. The Bcrp study of language and literacy
attainment47 found that teachers’ ratings of children’s Communication, Language and
Literacy on the Early Years Foundation Stage Profile (Eyfsp) were able to predict later
performance on reading, spelling, reading comprehension and arithmetic. Together with
teacher rating of Phonics progress in Year 1, these ratings predicted almost 50% of the
47 Snowling, M. J., Hulme, C., Bailey, A. M., Stothard, S. E., & Lindsay G. (2011). Better communication research project: Language and literacy attainment of pupils during early years and through KS2: Does teacher assessment at five provide a valid measure of children’s current and future educational attainments? DFE-RR172a. London: DfE. https://www.education.gov.uk/publications/eOrderingDownload/DFE-RR172a.pdf
variability of children’s later performance in Year 3, suggesting that teachers’ early ratings on
these aspects of the Eyfsp can act as a useful indicator of which children may be at risk of
later literacy problems. These data point to the importance of recognising the significance of
poor performance on the communication, language and literacy aspects at the end of the
EYFS for children’s future literacy skills and as a mechanism for identifying children’s Scln.
The approach that is supported by research is the development of a system of monitoring
progress, including response to the teaching and other interventions implemented. Evidence
does not support a one-off screening as children’s developmental trajectories vary. A well
developed tool such as the revised Early Years Foundation Stage Profile examined in our
study provides an important source of information from which teachers and others can build
interventions. Children’s responses to these should then be monitored and the information
used to shape later support through a response to intervention model.
Diagnostic labels
Parents’ use of diagnostic labels is of interest. When asked to describe their child’s needs,
some parents used terms such as Asperger’s syndrome, Adhd or dyslexia; they referred to
their child as ‘dyslexic’, ‘slightly autistic or ‘on the autistic spectrum’ . No parents used a
diagnostic label for speech and language difficulties, such as a specific language impairment
or phonological disorder or speech sound disorder, although some parents referred to ‘social
communication difficulties’. Neither did parents spontaneously use the term speech,
language and communication needs or Slcn, the term coined by the Bercow review.
In the interviews with practitioners48, participants were asked what they understood by the
label ‘speech, language and communication needs (Slcn)’. In response, SLTs tended to list
all the various diagnoses that would give rise to a range of speech, language and
communication needs. For example, they would include stammering, Asd, learning
difficulties, as well as specific language impairment and specific speech sound disorders.
Thus SLTs appear to be using the broader and inclusive meaning of Slcn. Although
education practitioners did not list diagnostic categories, they too were inclusive in their
application of the term. For instance, one practitioner indicated that all children who had
special educational needs were likely to have speech, language and communication needs.
So in discussion, educational practitioners were also using Slcn in its broad and inclusive
sense.
48 Roulstone, S., Wren, Y., Bakopoulou, I., Goodlad, S., & Lindsay, G. (2012). Exploring interventions for children and young people with speech, language and communication needs: A study of practice. London: DfE.
3.2 Provision
Once identification and access have been achieved, children move into the phase
associated with ‘getting on’49 and making progress, with the expectation of benefits to both
the child and parent50. However the reality of this phase does not always match parent
expectations51. At the point of identification, parents have often already begun to try and
help their child52 and subsequently report dissatisfaction that intervention was ‘a waste of
time’ because it has not provided new ideas or gone beyond what they have already tried at
home53.
For the families in the prospective study, support during the preschool years was variable
with some children being seen two or three times, others receiving a six week block of
intervention. This matches the findings of the Slt survey54 which showed that although most
commonly, SLTs were seeing children in the preschool years on a once a week basis over a
period of six weeks, there was a range with some SLTs seeing children once a fortnight or
once a month.
Generally parents in the prospective study were positive about the statutory assessment and
statementing process and their level of involvement, about the progress their children had
made and felt that the school was meeting their child’s needs. However in a number of ways,
the experiences of parents of children with Asd was more positive than those whose
children had Li: they felt more involved in the assessment and statementing process, more
of them reported access to additional support and to Slt input. These differences were
confirmed by data from special educational needs coordinators (SENCOs) who also
indicated that children who have Asd were more likely to be receiving additional support
than children with Li. Overall though, there was no difference between parents of children
with Asd and with Li in their overall levels of satisfaction with the school, a similar finding to
Parsons et al. (2009).
49 Glogowska & Campbell (2004) ibid. 50 Auert, H., Trembath, D., Arciuli, J. & Tomas, D. (2012). Parents’ expectations, awareness and experiences of accessing evidence-based speech-language pathology services for their children with autism. International Journal of Speech-Language Pathology, 14(2), 109-118. 51 Lyons et. al. (2010) ibid. 52 Marshall, J., Goldbart, J. & Phillips, J. (2007). Parents’; and speech and language therapists’ explanatory models of language development, language delay and intervention. International Journal Language and Communication disorders. 42(5), 533-555. 53 Rannard et. al. (2010) ibid. 54 Roulstone, Wren, et al. (2012) ibid.
Parents of children in mainstream schools with designated specialist resource were more
positive than those in mainstream schools. Generally parents whose children were in
mainstream settings were less aware of exactly what support was being provided than those
in specialist resourced settings. Some parents of children who had recently made the
transition to secondary school commented that their child was ‘beginning to struggle’ or that
progress had stopped since moving to secondary. Overall, as one might expect, parent
satisfaction with a school seemed to be linked to how well they perceived that the school met
the child’s needs, the children’s progress and the child’s general happiness and well-being.
For those parents who were more dissatisfied, comments were made about perceived
shortages in resources or inappropriate staff training, the struggle to get decisions made and
then implemented. Although many parents would have liked to see an increase in the
support received, only a small number expressed concern that there was insufficient
support. However, when asked about how well SEN services were tailored to their child’s
needs, nearly one third indicated that they didn’t know or they didn’t respond to this question.
Knowledge about a child was seen to reside within a small number of staff (the head, the
SENCO and the class teacher but not the rest of the staff).
Parents who were satisfied (overall about 80%) talked about good communication and
having a sense of control. Some parents wanted more regular engagement with the school
whereas others felt that their other commitments would have made more regular
involvement difficult. Home-school books, which facilitate regular sharing of information
about what is happening at school and at home were mentioned as a useful tool.
In response to parents’ and children’s concerns about the knowledge and attitudes of other
people around the child (see ‘outcomes’ section below and preferred outcomes report), a
parent-report questionnaire is currently being developed. This asks for parents’ views on
how other children behave towards their child, how teachers and teaching assistants behave
towards their child, how teachers communicate with and support parents and about the
general opportunities the child is given in school.
As indicated, more than two thirds of parents in the Bcrp prospective study were satisfied
with their involvement in decision making and about their involvement in the child’s
educational choices and progress; however, we do not have data on parents’ actual levels of
involvement in the education of their child or in current Slt interventions. We know from the
survey of Slt practice55 that working with parents to deliver the intervention shows a
gradually diminishing pattern as the child progresses through education. In the preschool
years, over 60% of responding SLTs reported that their most typical pattern of intervention
delivery was by working with parents. By secondary school this had reduced to less than
10% of SLTs who were working in this way. This probably reflects the general patterns of
parental engagement in education as children progress through the system. However,
parents in our studies have expressed concern about their child’s progress as they enter
secondary school and welcomed communications such as through home-school books. The
extent of the tail-off in working with parents could therefore usefully be investigated, from
both the child, and the parents’ perspectives in terms of how best to maintain an effective
partnership throughout a child’s education.
The cost of involvement
One of the projects within the Bcrp has focused on the costs and cost effectiveness of
services for children with SLCN56,57. There are a number of specific costing issues which are
relevant to parents in their involvement in services for children with Slcn. Parents play a
key role in supporting, and in some cases actually providing, the intervention that is offered.
This balance changes somewhat as the child gets older and, as shown above, in many
cases the focus of engagement shifts from the parent to the school. Nevertheless the
supportive role remains key to the long term welfare of the child with Slcn as in all other
areas and for some children. No one would assume that such support can reasonably be
costed. It is what parents do. But the situation is rather different for the younger child where
the specialist intervention – often provided by the speech and language therapist – depends
not only on support but the active engagement of the parent. Parents are being explicitly
trained to increase the relevant interactive behaviours which are then intended to improve
the child’s communication skills. Effectively the parent is becoming the therapist or at least is
playing a key role in the therapy.
Whether this has an impact on the costs of the intervention depends upon how that
intervention is costed. If we take a relatively narrow service perspective we include the cost
55 Roulstone, Wren, et al. (2012) ibid. 56 See Section 9 in Lindsay, G., Dockrell, J.E., Law, J., & Roulstone, S. (2011). Better communication research programme 2nd interim report. DFE-RR 172.London: DfE. (131pp). https://www.education.gov.uk/publications/eOrderingDownload/DFE-RR172.pdf 57 Law, J., Beecham, J. & Lindsay, G. (2012). Effectiveness, costing and cost effectiveness of interventions for children and young people with speech, language and communication needs. London: DfE.
of health or educational services (personnel/material resources etc). If we take a broader
societal perspective we should take into consideration the costs to parents in terms of
transport to the clinic for example; or in terms of their time involved in the programme, both
attending the clinic with their child but also the time taken carrying out the intervention in the
home. This is not a trivial issue because it is likely to lead to consequences in terms of the
choice of intervention. In our review of the cost effectiveness literature related to SLCN58 we
identified a relatively small number of cost effectiveness studies and, of the five, all involved
young children and of these three included some costs for parents. Two actually costed
parental time59,60.
As these studies show, if parent-led Slcn interventions are to be evaluated but researchers
do not include the cost of that parental input the overall cost of the programme is
misrepresented. One might argue that it does not really matter if all parents respond the
same providing the intervention as directed. However if there is differential responsiveness
on the part of parents this might reasonably be expected to lead to a different response to
the intervention – a fact that would be lost without the appropriate monitoring of parental
time. So, for example, one might anticipate that an intervention that is both supported and
carried out by highly motivated parents is likely to have a greater impact than one where the
parents are disengaged. This might lead to a statistical difference in outcomes but, without
knowledge about time and potentially costing of parental engagement, one might be forced
to conclude that the first intervention worked because of the nature of the intervention rather
than the commitment of the parent; and an intervention may appear unrealistically
inexpensive if parental costs are not taken into consideration. This could have implications
rolling out an intervention because one that worked in one context may well not work in
another. A careful consideration of the costs of involvement for parents is therefore
important.
3.3 Outcomes
Within the National Health Service in the UK, patients’ experience of the quality and
outcomes of care have become a major indicator of quality and will be incorporated in the
58 Law, J, Zeng, B. Lindsay, G. & Beecham, J. (2011). The cost-effectiveness of interventions for children with Speech Language and Communication Needs (Slcn): A review using the Drummond and Jefferson (1996) "Referee's Checklist" The International Journal of Language and Communication Disorders. 47, 1, 1-10. 59 Barnett, W. S., Escobar, C.M. & Ravsten, M. T. (1988). Parent and clinic early intervention for children with language handicaps: A cost-effectiveness analysis. Journal of Early Intervention, 12 (4), 290-298. 60 Eiserman, W., McCoun, M., & Escobar, E. (1990). A cost-effectiveness analysis of two alternative program models for servicing speech disordered preschoolers, Journal of Early Intervention, 14 (4), 297-317.
indicators used to evaluate whether or not Health Commissioners are commissioning
appropriate services for their local populations61. This shift in emphasis away from process
measurement such as the number of children receiving a certain service, to a focus on
outcome measurement, particularly ‘patient-reported outcomes’ is seen as the way to drive
improvement in services and the development of services that are relevant to the needs and
perspectives of those who use the services62. Measures that reflect the views of parents or
children with Slcn are therefore an important tool in the improvement of services for these
children.
Similarly within the education system, over recent years, there has been an emphasis on
making outcomes the starting point for defining services. So for example, one of the
conclusions of the Lamb Inquiry63 was that there had been a lack of opportunity for parents
to discuss their aspirations for their child and a general lack of confidence of parents in the
special educational needs system. A key recommendation was that children’s outcomes
should be at the heart of the system.
Data for a consideration of outcomes come from the ‘preferred outcomes’ studies and from
the telephone survey of the prospective study. The overarching view of preferred outcomes
that emerged from the parent focus groups was the fundamental nature of communication as
a skill underpinning other skills that lead to independence and inclusion. The theme of
independence included sub-categories of achievement, staying safe, being confident
consumers and economic well-being. The theme of social inclusion included concepts of
friendships and peer relationships. A similar range of outcomes emerged from the telephone
survey although the idea of hierarchy was not apparent in that study. This is probably related
to the nature of the data, the telephone survey providing shorter responses whereas in the
preferred outcomes study, the qualitative focus groups provided parents with an opportunity
to explore the notion of outcomes in depth.
61 NHS Commissioning Board (2011). Working together for a stronger NHS. London: Prime Minister’s Office. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_1 25848 62 Morris, C., Gibbons, E., Fitzpatrick, R. 2009. Child and Parent reported outcome measures: A scoping report focusing on feasibility for routine use in the NHS. A report to the DoH. Patient Reported measurement Outcome Group. http://phi.uhce.ox.ac.uk/pdf/PROMs_WithChildren_Oxford_2009.pdf 63 Lamb, B. (2009) op cit https://www.education.gov.uk/publications/standard/publicationDetail/Page1/DCSF-01143-2009
From the telephone survey it appears that parents place more emphasis on academic
outcomes. This may be related to differences in the sampling of parents. In the telephone
survey, the children were all in mainstream schools (including schools with specialist
resources) at the start of the study whereas the preferred outcomes study included parents
with children in special schools as well as mainstream. Nonetheless, the parents in the
preferred outcomes study did talk about academic outcomes particularly, literacy and
numeracy. They also talked of the need for children to get qualifications. Parents in the
preferred outcomes study usually made the link between these skills and life skills, for
example with respect to maths one parent stated:
Time and money, you have to understand it. On a basic level you don’t have
to be some amazing mathematician but you need to understand the basics
...we all need to have acquired those basic skills, handling money and
knowing what the time is and when we’ve got to be there.
Another similarity in the two sets of data is the evidence of different value placed on
outcomes depending on the characteristics of the child. In the telephone survey, parents of
children who have Asd talked more often about social outcomes than did parents of children
with Li. In the preferred outcomes survey, there were differences between parents whose
children had differing types of Slcn: for example, parents of children with receptive
language impairments were more likely to value making friendships and being socially
confident; academic achievements were less important for parents of children with learning
difficulties; coping with change was an important outcome for parents of children who have
Asd (see preferred outcomes report for further details on these differences).
Parents from the focus groups were not asked to discuss their views about access, current
interventions or provision. However, when they discussed outcomes they valued, they talked
about things that they would like to see change in terms of the understanding of other people
around them and their child. In particular they focused on the knowledge and attitudes of
family and professionals and the lay public. This angle did not emerge explicitly from the
telephone survey. However, if one examines parents’ areas of dissatisfaction in the
telephone survey, aspects such as teacher knowledge and awareness do arise.
Another difference between the two data sets is that parents in the telephone survey
mentioned their hopes for normality of their child. In the preferred outcomes data, normality
was referred to in terms of a desire for their children to be engaged in ‘normal’ activities; for
example one parent talked about their pleasure at hearing a child talking to friends through
Facebook or hearing the “normal sort of teenage stuff coming from his room”. Again the
differences here may be a function of sampling, with the telephone survey focusing on
children in a mainstream context; or it may be related to the data gathering method of a
semi-structured survey versus focus groups.
In the exploration of current practice, SLTs indicated the outcomes that they targeted with
various interventions. The outcomes targeted were generally a reflection of the children’s
needs and difficulties; for example, intelligibility was an outcome that was particularly
targeted for children aged between 4 and 7 years and for children with speech sound
difficulties; social skills were targeted particularly with children with Asd. However, currently
the research evaluating interventions for Slcn tends to use standardised assessments of
the child’s speech and language rather than more functional goals or quality of life
measurements. The systematic review that was part of the preferred outcomes project did
identify a number of parent- and self-report instruments that were relevant to the outcomes
of interest to parents but they are not routinely used in research or in practice. Furthermore,
the review identified a number of areas that were of concern to parents that were not
covered by the existing measures. These included the ability to stay safe and to cope with
change. Concepts which related communication to independence and inclusion were also
missing. Finally, other people’s attitudes and behaviours towards the children were not
included in the existing measures.
3.4 Key Issues
Early identification
It is encouraging to note that only one parent’s early concerns in the Bcrp prospective
study were dismissed. However, the process of identification was still variable and it is clear
that not all the children had had their difficulties identified and had accessed some kind of
intervention before they reached school entry age. So, the early identification of children with
Slcn continues to challenge us. The key issue to be discussed here then is how to move
this issue forward.
In recognition of the importance of early identification of children with Slcn, early years
practitioners are now required to complete a progress check at the age of two years64 or at a
suitable time following the child’s entry to the early years setting. The expectation is that this
will be carried out in collaboration with the parent, taking account of their knowledge of the
64 DfE, 2011 press release 6 July 2011 http://www.education.gov.uk/childrenandyoungpeople/earlylearningandchildcare/a00191829/governm ent-sets-out-reform-of-early-learning-and-childrens-centres
child and using the ‘Development Matters’ support materials65. These provide an outline of
the stages of communication and language development (listening and attention,
understanding and speaking) but do not function as checklists and do not provide criteria for
the identification of children with Slcn. There is no prescribed format for this check or the
report so there will be room for local practitioners to use a range of tools to support the
process. Thus there is an ongoing difficulty of interpretation of the cut-off point at which
concern should be raised, a referral to Slt be made and additional support be put in place.
The use of a single screening event is not supported by systematic reviews of the early
screening process66,67. The importance of listening to the concerns of parents about their
children’s speech and language development, in recognition of their expert knowledge of
their child, has been stressed for a number of years (e.g. since Hall and Elliman68) and
comparisons of parent concerns with professional diagnoses and children’s performance on
standardised assessments show high correlations69. However, the use of parent concern
alone or indeed in combination with professional screening has so far proved insufficiently
reliable as an indicator of need70,71. The use of a more detailed parent- report instrument
(the Children’s Communication Checklist: Ccc)72 produced a significantly better level of
identification than language testing alone in the classification of children with and without
language difficulties.
Thus, providing parents with more information about developmental indicators is likely to
support their ability to evaluate the development of their own child. An additional possibility is
to develop a parent report instrument that is based on more detailed descriptions of the
concerns that parents prospectively identify as their children develop. The concerns voiced
65Early Education (2012). Development matters in the early years foundation stage. London: Early Education and the Department for Education. http://www.ncma.org.uk/pdf/Development-Matters-in- the-Early-Years-Foundation-Stage.pdf 66 Law, J., Boyle, J., Harris, F., Harkness, A. & Nye, C. (1998). Screening for speech and language delay: a systematic review of the literature. Health Technology Assessment. 2 (9). 67 Nelson, H.D., Nygren, P., Walker, M. & Panoscha, R. (2006). Screening for speech and language delay in preschool children; systematic evidence review for the Us preventive services task force. Pediatrics, 117, 298-319. 68 Hall, D. & Elliman,D. (1986). Health for all children. Cambs Oup. 69 Roulstone, S., Loader, S., Northstone, K., & Beveridge, M. and the Alspac team, (2002), The speech and language of children aged 25 months: descriptive data from the Avon Longitudinal Study of Parents and Children. Early Child Development and Care, 172 (3), 259-268. 70 Klee, T. (2007) Screening 3-year-olds for language delay using selected parent-report measures: the jury is still out. Evidence-Based Communication Assessment and Intervention, 1(2), 58-59. 71 Laing, G. J., Law, J., Levin, A., & Logan, S. (2002). Evaluation of a structured test and a parent led method for screening for speech and language problems: Prospective population based study. British Medical Journal , 325 , 1152.. 72 Bishop, D.V.M. & McDonald, D. (2009). Identifying language impairment in children: combining language test scores with parental report. International Journal of Language and Communication Disorders, 44(5), 600-615
by the parents in the prospective study did reflect the diagnostic category of their child: the
parents with children with language impairment, spoke mostly about speech and language
traits; parents of children who have Asd spoke more about social communication difficulties.
However the questions to parents about their initial concerns required parents to reflect back
several years to when their child was much younger. Their memory of what their child was
like when they first became aware of a problem, might therefore be coloured by subsequent
diagnoses and child performance. An alternative would be to gather data prospectively from
parents when they first have concerns and to generate a detailed trajectory based on their
observations as the child develops.
Satisfaction with provision.
The majority of parents in the Bcrp studies expressed satisfaction with their levels of
involvement in decision making and with the provision received by their child. However,
there are important caveats to this. First, there was a striking difference between the parents
of children with Li and those with Asd: the parents of children with Asd reported higher
level of provision and higher levels of satisfaction than did parents of children with Li. These
differences were confirmed by reports from SENCOs and by observations. Second, parents
whose children were in mainstream with specialist provision were more satisfied than
parents of children in mainstream. Finally, it is of particular concern that approximately 19%
of parents were not aware of the additional support received by their child; approximately
one third of parents responding to the pilot questionnaire did not know if they were satisfied
with the level of provision from SLTs. Whilst saying that the majority of parents are satisfied
this always means that the experiences of some parents are negative. These parents feel
unsupported and dissatisfied with provision and feel that their child’s needs are not
understood. It is therefore important that, whilst we can celebrate the positives in how
parents perceive the provision for their child, we should not ignore those for whom the
system is clearly seen to be failing and is associated with marked unhappiness and distress.
Looking at the data from the prospective study, parents of children with language impairment
could be forgiven for concluding that the best way to access services is to obtain a diagnosis
of Asd. In another study of parents’ perspectives73 parents of children with autism did
indeed believe that the chances of accessing services increased dramatically once they had
obtained a diagnosis of autism. It is of concern that, despite the emphasis in the SEN Code
of Practice on determining provision on the basis of children’s special educational needs, it is
the diagnostic label that is apparently related to the provision of support, not the particular
73 Minnes, P. & Steiner, K. (2009). Parents’ views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome. Child: Care Health and Development, 35(2), 250-256.
needs of the child74. The apparent lack of power of the label Slcn to generate resources in
the same way as the label Asd will be of concern to parents whose children present
primarily with speech, language and communication needs.
Findings from the Bcrp have generated some potential indicators of the quality of schools
in terms of children with Slcn. First, the Bcrp has confirmed the particular vulnerability of
children with Slcn for social acceptance and for their emotional well-being. So, parents of
children with Slcn will be looking for schools that have a proven record with anti-bullying
policies and programmes for supporting the emotional development of the children. They
might also be looking for school staff that are prepared to listen to the views of the children
and young people themselves. These attributes should all be present in schools that have
‘Healthy School’ status. This status suggests that the school has good universal provision for
its pupils regarding their social and emotional well-being, that effective anti-bullying policies
will be in place and that the school has effective mechanisms for listening to pupils who have
special needs in the area of communication.
Second, parents are looking for outcomes that increase the independence and inclusion of
their children. So they will be looking for schools that appreciate the functionality of skills,
both academic and non-academic that are being acquired in school and that schools provide
both parents and children with the opportunity to discuss their aspirations for their children
and to be confident that children’s own views will be taken into account. In this case parents
might look for schools that have adopted the ‘Achievement for All’ programme. In these
schools there should be a well structured format whereby parents can discuss their
aspirations for their child, express concerns and agree targets. Parents who were satisfied
with their child’s provision talked about good communication practices between home and
school such as the involvement in decision making and the use of a home-school book.
Schools who are adopting the Achievement for All programme will be working towards
effective communication practices with parents.
Third, the Bcrp project ‘Communication Supporting Classrooms’75 has produced an
evidence based checklist to support teachers and schools in the provision of quality first
classrooms, to develop good practice at a universal level for supporting the communication
74 Dockrell, J., Ricketts, J., Palikara, O., Charman, T., & Lindsay, G. (2012). Profiles of need and provision for children with language impairment and autism spectrum disorders in mainstream schools: A prospective study. London: DfE. 75 Dockrell, J. E., Bakopoulou, I., Law, J., Spencer, S., & Lindsay, G. (2012). Developing a communication supporting classrooms observational tool. London: DfE.
development of all children. Quality first teaching will not necessarily be enough to support
all children with identified Slcn; for some children with greater difficulties, additional support
that is targeted on specific needs will be required in order to support their continued progress
and access to the curriculum. However, targeted or specific support is likely to be delivered
to maximum effect in the context of and building upon universal good practice. Schools
which show evidence that they regularly use the Communication Supporting Classrooms
checklist to audit and improve classroom practices are therefore more likely to provide
classrooms that are accessible for children with a range of Slcn.
Finally, the lack of awareness about provision that was expressed by some parents probably
reflects poor communication between some schools and SLTs and the parents, signalling
the need for better communication on an ongoing basis between school and parents and
between SLTs and parents. Furthermore, it also indicates that better information is needed
to facilitate parents’ judgement about what type or level of provision is satisfactory. One
resource developed within the Bcrp can provide information for parents about some of the
interventions available. The ‘What Works’76 report, soon to become an on-line resource
hosted by the Communication Trust, takes the most commonly used interventions and
evaluates what the research tells us about their effectiveness for which children. In the field
of Slcn, the evidence underpinning interventions is still in the early stages so it is not yet
possible to insist that any intervention used has to have strong levels of evidence. However,
having information about what research has been carried out can support parents in having
evidence informed discussions with practitioners.
Pathways to independence and inclusion
In their discussions of the outcomes they value for their children, parents have indicated that
they value independence and inclusion for their children. These two outcomes represent
overarching themes rather than concrete end states. So for example parents are looking for
outcomes that contribute towards a child or young person’s move towards increasing
independence and reaching their own best possible outcome, rather than a single goal such
as being able to live independently in their own home. For some parents, economic
independence, within a job that they enjoy, living with their own spouse and children may be
their eventual aspiration for their child. Others thought that their child may require some kind
of support and advocacy throughout their lives. Whilst parents recognise and value
academic success for their children they also have an holistic appreciation of the function of
76 Law, J., Lee, W., Roulstone, S., Wren, Y., Zeng, B., & Lindsay, G. (2012). “What works”: Interventions for children and young people with speech, language and communication needs London: DfE.
these skills in their children’s longer term life course. In terms of inclusion, this included a
range of ideas such as ‘real’ friendships, rather than those constructed by other adults,
social acceptance and tolerance of their child’s differences.
Given that parents value these outcomes for their child, they will be looking for interventions
that target these outcomes. The particular interpretation of independence and inclusion will
vary as a function of the individual child’s needs and difficulties and also as a function of
their age: ‘independence’ for a seven year old has different implications than for a young
person of fifteen. This challenges us to identify the functional pathways, from the
underpinning skills through to their enactment in context. So for example for a child of four
who is about to enter school and who is unintelligible and using only two-three word
utterances, what will the priority targets be to enable that child to function as independently
as possible in school and to be included in the mainstream class with his or her peers. For
children and young people with Slcn, their communication skills are a vital underpinning for
steps towards independence and inclusion. The challenge will be to identify for each child
the underpinning communication skills that are needed and the most appropriate evidence-
based intervention programmes or strategies to achieve them. In order to develop the
evidence-base around interventions, the collection of relevant data to evaluate progress
towards these outcomes is required. Evidence from the Bcrp study of current practice
suggests that outcome data is collected by as few as one third of Slt services.
This suggests the need for a sea change in the approach of services: there is a need to
systematically collect evidence of outcomes that can be shared with parents but, importantly,
that the outcome data collected reflects the concerns of parents. Furthermore, there is little
evidence that research into the effectiveness of interventions evaluates these outcomes.
This is, therefore, another area for clarification, bringing agendas of both practice and
research into line on this topic.
This report has drawn together findings from the Better Communication Research
Programme related to the perspectives of children with Slcn and their parents. For children
the focus was on their views of their quality of life and aspects of their lives that they would
like to see improved. In particular we focus on children’s social acceptance and emotional
well-being and target setting. From the parents’ perspective we focus on the process of
identification, satisfaction with provision and the pathways to outcomes of inclusion and
independence.
The findings highlight a number of key issues for children and their parents. We report these
and their implications below.
Children’s perspectives: key issues
Children’s reports of their quality of life suggest that they are particularly vulnerable
regarding social acceptance and emotional well-being.
Features of children’s lives that cause enthusiasm and interest were not reflected in
the school targets that they could remember.
The perspectives of parents are presented on the process of early identification, on the
provision experienced by their child and their views on outcomes that they value.
Parent perspectives: key Issues
Parents’ reports of the process of identification showed variability in the age and
process of early identification.
Although many parents were satisfied with provision for their children, there were
marked discrepancies: parents of children with Asd reported that their children
received higher levels of provision and reported higher levels of satisfaction than
parents of children with Li.
Lack of clarity about the use of the term Slcn was also identified as an issue that
may impact upon provision.
There were a number of parents who were not aware of the level of provision that
their child was receiving.
Parents valued outcomes related to the increasing independence and inclusion of
their children and recognised the vital role that communication skills play in the
achievement of these skills. The challenge is to identify the pathway from the
underpinning communication skill to the functional outcome and the evidence-based
interventions that achieve them.
Implications
Practitioners need to check and make themselves aware of the perspectives of
children and young people, particularly in terms of their views on their own social
acceptance and emotional well-being.
Understanding the perspectives of children and young people is also fundamental to
the process of developing relevant, meaningful, functional and motivational targets
that are shared with and by the children and young people.
Parents need easy access to information about developmental indicators of speech,
language and communication development and the factors which practitioners
recognise as cause for concern.
Prospective research is needed to investigate the early concerns of parents to inform
our understanding of the early developmental trajectories of children with Slcn.
Parents need better ongoing information, not just at the time of assessment of
special educational needs, about what is happening with their child, who is seeing
the child, and when.
Parents also need improved information about the evidence underpinning
intervention decisions so that they can be real partners in planning discussions and
can make evidence based choices.
Services should systematically collect evidence of children’s and young people’s
outcomes that can be shared with parents; importantly, the outcome data collected
should reflect the concerns of parents.
Research to investigate the effectiveness of interventions should include measures of
outcomes relating to independence and inclusion.
Since there will be differences of interpretation of the two higher level outcomes
(independence and inclusion) for particular children and young people, an explicit
discussion of the targeted outcomes for any intervention, whether in a practice or
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Appendix 1 – Bcrp Reports
All the Bcrp reports are available from the Bcrp page on the Department for Education’s website: http://www.education.gov.uk/researchandstatistics/research and also from the Bcrp page in the Cedar, University of Warwick website: http://www.warwick.ac.uk/go/bettercommunication Main report 1. Lindsay, G., Dockrell, J., Law, J., & Roulstone, S. (2012). Better communication research programme: Improving provision for children and young people with speech, language and communication needs. London: DfE. This report presents the main recommendations of the whole Better Communication Research Programme (Bcrp). It draws on evidence provided in the thematic and technical reports. This report also considers the overall implications for policy, practice and research, and indeed seeks to bridge the gap between this substantial research programme and the policy and practice agenda. Interim reports 2. Lindsay, G., Dockrell, J.E., Law, J., Roulstone, S., & Vignoles, A. (2010) Better communication research programme 1st interim report DfE-RR070. London: DfE. (70pp). http://publications.education.gov.uk/eOrderingDownload/DFE-RR070.pdf This report presents interim findings from the project that had been underway between January and July 2010; best evidence on interventions; the academic progress of pupils with Slcn; economic effectiveness; the initial phase of the prospective longitudinal study of children and young people with language impairment (Li) and autism spectrum disorder (Asd); and the preferred outcomes of children and young people with Slcn, and of their parents. 3. Lindsay, G., Dockrell, J.E., Law, J., & Roulstone, S. (2011) Better communication research programme 2nd interim report. DFE-RR 172. London: DfE. (131pp). https://www.education.gov.uk/publications/eOrderingDownload/DFE-RR172.pdf This report presents interim findings of the project that had been underway between July 2010 – January 2011. Further work is reported from analyses of the national pupil data sets examining development and transitions of pupils with Slcn or Asd between categories of special educational needs, the prospective study, and parents’ preferred outcomes (an online survey). In addition, interim reports from new projects include: the initial phase of development of a Communication Supporting Classrooms Tool; a survey of speech and language therapists’ practice regarding interventions; a study of language and literacy attainment during the early years through Key Stage 2, examining whether teacher assessment provides a valid measure of children’s current and future educational attainment (led by Margaret Snowling and Charles Hulme); two studies of the relationship between Slcn and behaviour, with Victoria Joffe and Gillian Baird respectively; cost effectiveness of interventions; and the setting up of a prospective cohort study of speech and language therapy services for young children who stammer.
Thematic reports 4. Dockrell, J., Ricketts, J. & Lindsay, G. (2012). Understanding speech, language and communication needs: Profiles of need and provision. London: DfE. This thematic report examines the nature of speech language and communication needs and the evidence from Bcrp studies that have explained both the nature and needs encompassed by the category and the provision made to meet those needs. This report draws upon six projects (8, 9, 10, 11, 14 and 15). 5. Law, J., Beecham, J. & Lindsay, G. (2012). Effectiveness, costing and cost effectiveness of interventions for children and young people with speech, language and communication needs. London: DfE. This thematic report first considers the nature of evidence based practice in health and education before reviewing the evidence for the effectiveness of interventions for children and young people with Slcn. The report also considers cost effectiveness and how it might be measured before examining the evidence of the cost effectiveness of Slcn interventions. The report draws on projects, 8, 10, 11 and 12. 6. Lindsay, G. & Dockrell, J. (2012). The relationship between speech, language and communication needs (Slcn) and behavioural, emotional and social difficulties (Besd). London: DfE. This thematic report explores the relationship between Slcn and behavioural, emotional and social difficulties. . We argue that there are different patterns of relationship between Slcn and Asd, and different types of behavioural, emotional and social difficulties. The report draws on the 2nd interim report (report 3) and project reports 9, 11 and 15. 7. Roulstone, S. & Lindsay, G. (2012). The perspectives of children and young people who have speech, language and communication needs, and their parents. London: DfE. The Bcrp ensured that the perspectives of parents and children were explored through a number of different projects. This project explores the evidence primarily from projects 9 and 12, drawing on evidence from a series of specific studies of parents’ and children’s perspectives and also those of the parents in our prospective study. Technical reports 8. Dockrell, J. E., Bakopoulou, I., Law, J., Spencer, S., & Lindsay, G. (2012). Developing a communication supporting classroom observation tool. London: DfE. This study reports the development of an observational tool to support teachers, SENCOs, speech and language therapists and others to examine the degree to which classrooms support effective communication. The report comprises a review of the evidence base for developing effective communication and an account of the empirical study to develop and determine the technical qualities of the tool. 9. Dockrell, J., Ricketts, J., Palikara, O., Charman, T., & Lindsay, G. (2012). Profiles of need and provision for children with language impairment and autism spectrum disorders in mainstream schools: A prospective study. London: DfE. The prospective study was the most substantial project in the Bcrp running throughout the whole period of the research. Focusing on children and young people initially 6-12 years old,
we report on the nature of their abilities in language, literacy, behavioural, emotional and social development; the perspectives of the parents; the support provided as examined by classroom observations and specially created questionnaires completed by their teachers and SENCOs. 10. Law, J., Lee, W., Roulstone, S., Wren, Y., Zeng, B., & Lindsay, G. (2012). “What works”: Interventions for children and young people with speech, language and communication needs. London: DfE. This report provides a review of 60 interventions for children and young people with Slcn, all evaluated against 10 criteria. The report will form the basis of a web-based resource to be developed by the Communication Trust for easy access by practitioners and parents. 11. Meschi, E., Mickelwright, J., Vignoles, A., & Lindsay, G. (2012). The transition between categories of special educational needs of pupils with speech, language and communication needs (Slcn) and autism spectrum disorder (Asd) as they progress through the education system. London: DfE. Analyses of the School Census and National Pupil Database are used to examine the transition made by pupils with Slcn or Asd over time and by age. We examine factors that are associated with transition between levels of special educational need (School Action, School Action Plus and Statement) and having no special educational need (non-SEN), including having English as an Additional Language and attainment. We also explore school characteristics associated with different transitions to other categories of SEN. 12. Roulstone, S., Coad, J., Ayre, A., Hambley, H., & Lindsay, G. (2012). The preferred outcomes of children with speech, language and communication needs and their parents. London: DfE. This report provides findings from four different studies addressing the perspectives of children and young people with Slcn, and those of their parents. Data are reported from arts-based participating workshops for children, focus groups and a survey for parents; and a systematic review of quality of life measures for children. 13. Roulstone, S., Wren, Y., Bakopoulou, I., Goodlad, S., & Lindsay, G. (2012). Exploring interventions for children and young people with speech, language and communication needs: A study of practice. London: DfE. As a complementary study to our analysis of the evidence for interventions, we also carried out an interview study of speech and language therapy managers and educational psychology service managers, on the basis of which we conducted a national survey of speech and language therapists to examine prevalence of use of the different approaches. 14. Snowling, M. J., Hulme, C., Bailey, A. M., Stothard, S. E., & Lindsay (2011). Better communication research project: Language and literacy attainment of pupils during early years and through KS2: Does teacher assessment at five provide a valid measure of children’s current and future educational attainments? DFE-RR172a. London: DfE. https://www.education.gov.uk/publications/eOrderingDownload/DFE- RR172a.pdf We report a study led by Margaret Snowling and Charles Hulme which explored whether teacher assessment and monitoring could be used to identify children with language difficulties in need of early interventions. This study was conducted to inform the Tickell Review of the Early Years Foundation Stage, in particular the proposals for a simplified framework and assessment process.
15. Strand, S., & Lindsay, G. (2012). Ethnic disproportionality in the identification of speech, language and communication needs (Slcn) and autism spectrum disorders (Asd). London: DfE. This report complements that of Meschi et al (number 11). Using School Census data from four years (2005, 2007, 2009 and 2011) the report examines the issue of ethnic disproportionality (i.e. over- and underrepresentation of pupils from different ethnic groups) with respect to Slcn and Asd. 16. Roulstone, S., Hayhow, R., White, P. & Lindsay, G. (2012). Prospective cohort study of speech and language therapy services for young children who stammer. This prospective cohort study follows children referred to speech and language therapy services because of stammering. The study tracks the children’s process through the system and their outcomes. 17. Meschi, E., Vignoles, A., & Lindsay, G. (2010). An investigation of the attainment and achievement of speech, language and communication needs (Slcn). http://www.warwick.ac.uk/go/bettercommunication This technical report presents early analyses upon which the study reported in report number 11 is based.
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