The third policy change mentioned was the new SEND Code of Practice (Department for Education, 2015). Following claims by the Conservative party's Special Educational Needs Commission that "there was over-identification of special educational needs in schools" (Norwich, 2014, p. 418), Ofsted recommended that students not on the SEN register but classified as "School Action" should no longer be classified as having SEN. This recommendation was somewhat realized in the 2015 Code with the School Action and School Action Plus categories (students with lower levels of need) being replaced by SEN Support, which involves a "graduated approach to identifying and supporting pupils and students with SEN" (Department for Education, 2015, p. 14). A second change saw the replacement of Statements of SEN with Education Health and Care Plans (EHCP) for students with the highest level of needs.

The Third Sector Representative in the current study questioned whether this change could be linked to the recent rise in school exclusion numbers:

"What's happened to those hundreds of thousands of children with SEN, who had SEN five years ago and now don't? Now is that why we're suddenly seeing a big increase, because all of those children at School Action with low level needs have simply had their support removed and are now struggling with their learning and therefore getting into trouble through the disciplinary side?"

While some of the LA practitioners indicated that the change to the Code of Practice had resulted in a reduction of services, others (even within the same LA) believed that though the process had changed the support available remained the same:

"When the SEN Code of practice changed we then reduced our specialist teachers to give advice on behavior." (LA1— Respondent 2)

"The process is different, but the support that was available is still there." (LA1—Respondent 1)

Related to resources, one practitioner when speaking about a rise in students with SEN being excluded or at risk of exclusion in their LA, discussed how this may be due to an understanding that schools must demonstrate that they have invested in interventions to meet a student's needs before an EHCP assessment can be requested (there is in fact no legal basis behind this understanding):

". . . we have had more young people with Education Health and Care Plans recommended for permanent exclusion and we've had more kids with other SEND that are less, not actually with Education Health and Care Plans, who've been excluded, so I think our SEND exclusions have gone up a little. Whether there's a direct correlation between that and the new code, because I do think the new SEN code in terms of its, the way it's written, in terms of empowering parents, I think is the absolute right way. . . whether there's an issue around the way that now schools have to put in the first so many thousand pounds. . . " **(**LA1—Respondent 2)

Therefore, the extent to which the new SEND Code of Practice has influenced the rise in school exclusion figures is debatable and warrants further exploration.

#### Theme 2: School Governance

The second identified theme related to the changing education landscape and the relationship between LAs and Academies. In LA1, two of the respondents considered that the LA had maintained a good relationship with their local Academies. However, the change in governance had meant that there was sometimes a delay in Academies reporting the needs of students to the LA, and a reduction in advice and assistance sought from their LA practitioners:

"We don't get contacted as early in the process as we used to." (LA1—Respondent 1)

However, a third respondent from the same LA, believed that:

". . . the whole academization programme has seriously undermined the relationship between the local authorities and schools and I think it's really unclear" (LA1—Respondent 3).

Unlike the first two respondents, Respondent 3 considered the relationship between the LA and its local Academies to be varied and noted that the LA had "recently begun to meet resistance from academies about attending hearings to support parents." From a different angle, Respondent 3 also indicated that some maintained schools in their LA had been using the threat of academization as a bargaining tool to achieve their aims from the LA.

In LA2 respondents were much more aligned and firmer in their beliefs that the changes to school governance had affected exclusion practices:

"I also think the academy thing is one of the reasons [for the increase in school exclusion rates]" (LA2—Respondent 1)

When asked about whether they believed the freedom that Academies have was linked to the use of exclusion, LA2 Respondent 2 commented:

"Oh, without a doubt, it absolutely does and because also, it gives that message: 'You do what you want to and it's not for the Local Authority to tell you how you should run things'. So, yes, and also I think it probably comes down to the individual ethos and the structure within a school and that does start at the top, doesn't it?" (LA2—Respondent 2)

Linked to the changing role of LA practitioners, was the subtheme of responsibility:

"What should the Local Authority role be in that [exclusion process] and what do schools want? Because there's an element of want and what our responsibilities in terms of Ofsted because we are inspected and challenged and we carry responsibility for those children, yet we don't—we don't have the same authority that we once had. So, this is the big bubble of challenge." (LA2—Respondent 2)

This relates back to the Third Sector Representative's earlier comment about who is responsible for excluded students becoming "quite muddied." LAs are having to juggle their responsibility as a maintaining authority, while also developing their role as "facilitator" in the increasingly devolved system (Parish and Bryant, 2015). This is particularly relevant to school exclusions, as the LA retains responsibility over students who are permanently excluded. The extent to which the LA role is determined by the LA or Academies is also an area that needs further exploration, as this will ultimately determine the relationship and extent of collaboration between the two organizations. It can be argued that LAs, as the middle tier, are being squeezed by both school and system level factors (Daniels et al., 2018).

Relatedly, with LAs having less power to direct Academies over particular issues there has been concern that schools are opting out of systems in place to ensure vulnerable students receive an appropriate education (House of Commons Education Committee, 2018), such as In Year Fair Access Panels (IYFAP), and under increasing accountability pressures "game the system" by controlling their intakes (e.g., accepting fewer students with EHCPs; ibid). IYFAPs are designed to ensure that unplaced children, especially the most vulnerable or hard to place, are offered a school place quickly in order to minimize time spent outside education. Indeed, LA2, Respondent 2 stated how their number of referrals to the Education and Skills Funding Agency to direct schools to take students who required a school place had increased.

However, it cannot be claimed that only Academies have the desire to reduce the number of disruptive students in their schools. Talking more broadly, LA1 Respondent 3, noted how "schools want old school EBD [Emotional and Behavioral Difficulties] schools," "they want to remove the problem from their school."

#### Theme 3: School Culture and Ethos

The third theme revolved around school culture and ethos. When asked by the interviewer: ". . . are you sensing a difference in culture and sort of ethos?" LA1 Respondent 2 answered:

"Yes, I am. I think some of the behavior policies, if I read them, they're less conducive to kids who've got additional needs. They're more rigid. . . there's less movement within them."

There was suggestion that the change in language, had also led to a change in culture and practice in school, and that messages instilled by government officials had played a part in this change:

"We've become less inclusive in our mainstreams." (LA2— Respondent 1)

"It feels like there's a culture of much less tolerance of behaviors in schools than there used to be. We have anecdotal evidence from schools of things Ofsted inspectors said about how you will never be good or outstanding whilst you have those youngsters in school. . . I don't think Ofsted inspectors would give that message now, but the damage has been done." (LA1—Respondent 3)

Both of these points link back to the change in political discourse discussed in Theme 1, and the performativity pressures placed on schools which will be further explored in Theme 4. Related to the above, LA1 Respondent 3 believed that the change in political discourse around inclusivity was illustrative of a much broader societal change in attitude:

"I think their [school staff] attitudes reflect the attitudes of society at large, so I think society is giving permission to those professionals who already hold those views, but possibility also influencing people who wouldn't have been going down that route, but are finding it really hard going because there are some really difficult kids out there who, in the past would have thought, 'I've got to try and do more', and now—they can, 'Well it's ok, I can just say it's their fault, it's the child's fault, get them away because my job is to get everybody to A<sup>∗</sup> '."

Many authors have spoken about the increasing individualization of problem behavior as highlighted by the phrase "it's the child's fault" in the above quotation, and the pressure of perverse incentives on teachers to move away from social and emotional aspects of learning and focus wholly on academic achievement.

#### Theme 4: Accountability, Performativity, and Marketization

As has already been touched upon, the accountability and performativity pressures that schools and teachers find themselves under in the current educational climate were also mentioned as a key factor that may be driving the rise in school exclusion figures in England. One particular accountability measure that was mentioned by many of the respondents was the Progress 8 benchmark, which is based on students' performance in eight qualifications, with English and Mathematics receiving double weighting:

"Our feeling is that it is because of how schools are judged, that it's about if kids aren't going to succeed in terms of the data, and Progress 8 is not going to help." (LA1—Respondent 3)

There was a feeling amongst many of the respondents that there was a lack of desire from schools to invest in students who were unlikely to meet the Progress 8 benchmark:

"There's a real reluctance now for schools to put in an alternative package in Key Stage 4 [students aged 14–16]. Now, whether that is to do with. . . Progress 8, it's because of the qualifications they will take, yeah. And also the cost implication, and a permanent exclusion, even the other week I asked a headteacher if he would consider an alternative package for this young man, and his answer was financially it wasn't an efficient use of the school resources, so the answer was no." (LA1—Respondent 2)

"So, a headteacher said to me, you know 'It'll cost me £12,000 to put a full-time alternative package in', and bear in mind what you get to do is the AWPU [Age Weighted Pupil Unit], you know, age weighted pupil, I think, which is about £4,000 as well, so if you do the sums, yeah, and then secondary to the money, when the young person is at the alternative provider it's going to significantly impact on my Progress 8, and that's what schools are telling us." (LA1—Respondent 2)

"Everybody has to concentrate on the pure part of the curriculum and teaching which is why we get the exclusions we get. . . Actually, there are cases where school staff would say 'We'll take the hit, we'll take the fine'." (LA2—Respondent 2)

This last quote draws attention to a related issue raised by the respondents, namely the narrowing of the curriculum:

"The curriculum has been made much more prescriptive, to get to the expected level, it's far more difficult and teachers who want to teach inclusively are finding it very difficult. . . which has knock on effects on behavior and engagement." (LA 1—Respondent 1)

Moreover, when making decisions about whether or not to exclude, many of the respondents noted that the decision was not only based on whether or not the student under question would meet the Progress 8 benchmark, but whether or not they would also prevent their classmates from achieving due to their disruptive behavior. In the operation of a marketized system, schools must also prove to consumer parents that their schools provide a safe environment for their child to learn. Consequently, some of the respondents believed that schools were refusing students who may negatively affect the school's image:

"Parents like good behavior in schools. That's a big selling point. And we don't care about our neighbors next door." (LA2— Respondent 1)

#### Theme 5: Increasing Demands, Reduced Capacity, and Financial Pressures

The final theme related to the conflict between increasing demands on the one hand and reduced capacity and financial pressures in both schools and LAs on the other. Of course there will inevitably be some differences in views expressed across LAs and the Third Sector because different policy and funding decisions are made by different LAs and in particular decisions that have been made as a response to cuts in LA funding. Turning first to the increasing demands, one of the most prevalent problems spoken about was mental health:

"So, social, emotional and mental health and Autism Spectrum Disorder are our two biggest pressure points at the moment." (LA1—Respondent 1)

Despite the recognition of the problem, the view put forward by many of the LA practitioners was that they did not have the capacity to address it:

"I think because the demand seems to have increased, and yet whilst we're realigning and restructuring services, we haven't managed to keep pace with the increase in demand yet." (LA1—Respondent 1)

Yet LA1 Respondent 1 did not think that staff restructuring was necessarily negative. Although in the short term she acknowledged that they were falling behind in case management, she believed in the longer term the restructuring could have a positive effect on ensuring that students' needs are met. Reflecting on her own new role, she noted how the restructuring had resulting in her having a position where she had oversight of many areas, which meant that she had a better understanding of "who to contact and who links with who." Related to this point, there was a general recognition by the respondents of the importance of multi-agency/professional working. However, many believed that this type of working continues to be constrained by the silos that exist between different LA departments.

Additionally, when comparing the two LAs, even though the official figures showed that LA1 boasted higher rates of permanent and fixed period exclusions in 2016/17 than LA2, in general they were more positive about their current situation (although they saw themselves as "just so managing"; LA1— Respondent 1). Despite a reduction in staff across many areas, it seemed that they had retained more services and still saw their primary function as providing early intervention (even though as we have seen they were not being contacted as early in the process as they had been in the past to discuss students' needs).

In contrast, LA2 believed they were working in reactive mode:

"Teams have been cut so heavily, people are so busy doing the business of fire-fighting." (LA2—Respondent 1)

"I think we've just been in a reactive phase because of the figures and the staffing situation we've had." (LA2—Respondent 2)

"To be frank, we're in a position at the moment where schools are feeling the pinch financially, they are struggling with the reduction in all services across the board and support systems and increasingly turning to exclusion because I don't think they feel genuinely they have another option." (LA2—Respondent 2)

The Third Sector Representative's description of the high needs block funding provides another example of the dual pressures of increasing demands, and reduced capacity:

"So what I've been writing this morning is about the high needs block, and that's the block of funding that Local Authorities hold to fund SEN and Alternative Provision (AP), and like all these systems, they have certain statutory duties. So they've got a job with the high needs block to keep kids in mainstream. . . When the kids get excluded or need to go to special school, the money gets taken out of the high needs block to pay for it and reduces the amount that the Local Authority can support the schools. So every graph is going up. The number of kids [who] are excluded is going up. The number of kids with EHC plans is going up. The number of kids in special school is going up. So as all these go up, the high needs block gets smaller and smaller, so the support that they can give to schools gets smaller and smaller. The behavior support team gets smaller and smaller. So then mainstream is even less able to keep them in, so more kids fall out, so we end up in a cycle, and that's where we are now, and it's going to burst."

A recent report commissioned by the Department of Education (Parish and Bryant, 2015) similarly found that changes to funding formulas (e.g., high needs) and funding inequities between schools, coupled with an increasingly autonomous education system, have resulted in a breakdown in some areas of joined up services for vulnerable children and their families.

In the respondent accounts in the current study, there was discussion over how the number of students being permanent excluded in some areas was outstripping the number of places available at the local AP Academy/Pupil Referral Unit (PRU). This was found to result in one of two things, either those who were permanently excluded were failing to receive a spot and spending long periods of time out of education, or the permanently excluded students were allocated all of the places within the AP/PRU, meaning that no early intervention alternative packages could be offered by the provider. In addition to this, in some cases the LA practitioners described the allocation of provision as "ad hoc," determined by what was available, rather than being needs-led, and affected by the geographical location of the provision in relation to the students' home.

As well as a reduction in early intervention support, some of the LA practitioners discussed how in the past they had been able to work with excluded students and their families over extended periods, and support students during their transition back into mainstream school, however, they no longer have the resources to be able to do this.

Lastly linking back to Theme 4, some of the respondents believed that as school budgets decrease, and services increasingly become "traded" (LA2, Respondent 1), schools are making the financial decision to exclude:

"Our argument is that schools are meant to make Alternative Provision for those children who struggle in the mainstream curriculum and the schools don't want to fund any form of Alternative Provision, they just want to get rid." (LA 1— Respondent 3)

"As schools' budgets reduce, schools are beginning to just look down at themselves, they have less capacity and they're certainly not up for buying in extra things." (Third Sector Representative)

The final quote below provides a summary example of the multiple pressures faced by schools and the impact this may be having on school exclusion practices:

"We had a change of curriculum, change of assessment, we had the change of Code of Practice. 2014 for teachers was pretty flipping stressful, and I think if teachers are stressed, they find it harder to manage stressed children." (LA2—Respondent 1)

Teacher burn out, and recruitment and retention issues were also briefly mentioned in relation to the above point, however, these issues require further exploration before any conclusions can be drawn.

#### CONCLUSION

The 1978 Warnock Report made the case in the UK for a number of actions that, it was argued, would make the integration and support of young people with SEN more effective. These included: a cohesive multi-agency approach in assessment and determination of SEN and subsequent provision; early intervention with no minimum age to start provision for children identified with SEN; better structural and organizational accountability; the appointment of a SENCO in each school; parental input to be valued and considered alongside professional views in matters relating to the child; and a recommendation that special classes and units should be attached to and function within ordinary schools where possible. The 1981 Education Act introduced a number of regulations and rights which supported the development of these forms of practice. However, the introduction of competition between schools driven by measures of attainment by the 1988 Education Act introduced new incentives for schools that disadvantaged students with SEN. At the same time there was a discourse shift from integration, or fitting young people with special educational needs into a system, to inclusion or inclusive practice in which inclusive systems were to be designed and developed.

In the aftermath of this wave of policy development, a nascent tension between policies designed to achieve excellence and those seeking to achieve inclusive practice emerged. Whilst the devolved parliaments in Scotland and Wales have continued to try to give priority to inclusion in education, in recent years these tensions in England have intensified and there is growing concern about the ways in which schools are managing the contradictions between these two policy streams. There is widespread public and political unrest about the variety of ways in which young people with SEN, who may be seen as a threat to a school attainment profiles, are being excised from the system either through formal exclusion or other, more clandestine, means.

This paper has charted the move from attempts to meet need with provision as outlined by Warnock to the current situation where the motives which drive the formulation of provision are determined by what are ultimately economic objects. We have argued that policy changes in England in particular have resulted in perverse incentives for schools to not meet the needs of SEN students and which can result in their exclusion from school in ways that are comparable to educational policies of segregation in NI.

#### ETHICS STATEMENT

Ethical approval was acquired from the University of Oxford's Central University Research Ethics Committee (CUREC). Written informed consent was obtained from all participants.

#### AUTHOR CONTRIBUTIONS

HD, IT, and AT contributed conception and design of this article. HD wrote the first draft of the manuscript. IT and AT wrote sections of the manuscript. AT analyzed the data. All authors contributed to manuscript revision, read and approved the submitted version.

#### FUNDING

The research was funded by the John Fell Fund, grant number 162/092.

#### REFERENCES

Bauman, Z. (2004). Wasted Lives: Modernity and Its Outcasts. Oxford: Polity Press.

Department for Education and Skills (2001c). SEN Toolkit. London: DfES.

Department for Education and Skills (2004). Removing Barriers to Achievement: The Government's Strategy for SEN. Available online at: https://webarchive. nationalarchives.gov.uk/20130404091106tf\_/https://www.education.gov.uk/ publications/RSG/publicationDetail/Page1/DfES%200117%202004 (accessed April 8, 2019).

#### ACKNOWLEDGMENTS

We would like to acknowledge the work of Ted Cole and the Excluded Lives Group in collecting the data.

**Conflict of Interest Statement:** The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Copyright © 2019 Daniels, Thompson and Tawell. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

# Impact of Research About the Early Development of Children With Intellectual Disability: A Science Mapping Analysis

Carlo Schuengel 1,2,3 \*, Maaike M. van Rest 1,2,3, Catherine E. Stanford<sup>4</sup> and Richard P. Hastings 4,5

*<sup>1</sup> Section of Clinical Child and Family Studies, Vrije Universiteit Amsterdam, Amsterdam, Netherlands, <sup>2</sup> Amsterdam Public Health Research Institute, Amsterdam, Netherlands, <sup>3</sup> LEARN! Research Institute, Amsterdam, Netherlands, <sup>4</sup> Centre for Educational Development Appraisal and Research (CEDAR), University of Warwick, Coventry, United Kingdom, <sup>5</sup> Department of Psychiatry, Centre for Developmental Psychiatry and Psychology, School of Clinical Sciences at Monash Health, Monash University, Melbourne, VIC, Australia*

#### Edited by:

*Julie Elizabeth Dockrell, UCL Institute of Education, United Kingdom*

#### Reviewed by:

*Jenny Wilder, Stockholm University, Sweden Kitty-Rose Foley, Southern Cross University, Australia*

> \*Correspondence: *Carlo Schuengel<EMAIL_ADDRESS>
#### Specialty section:

*This article was submitted to Special Educational Needs, a section of the journal Frontiers in Education*

Received: *11 March 2019* Accepted: *03 May 2019* Published: *21 May 2019*

#### Citation:

*Schuengel C, van Rest MM, Stanford CE and Hastings RP (2019) Impact of Research About the Early Development of Children With Intellectual Disability: A Science Mapping Analysis. Front. Educ. 4:41. doi: 10.3389/feduc.2019.00041* The "Warnock Report" (Department for Education and Science, 1978) underlined the importance of early intervention for children with a range of special educational needs and the importance of partnership with families. This paper focuses on young children with intellectual disability to describe the longitudinal research on early development that has emerged since the report, and to describe the scholarly literature that has been impacted by this longitudinal work. First, we conducted a systematic literature search for primary reports of longitudinal studies on the early development of children with intellectual disability. Included studies were those that measured dependent (i.e., developmental outcomes) and independent variables (i.e., risk and resilience factors) on at least two measurement occasions (i.e., truly longitudinal), starting before the end of the 7th year of life, with samples including children with intellectual disability (or related terms). The topics of these studies, and of the publications that have cited these longitudinal studies, were extracted from titles and abstracts using machine reading and subjected to multidimensional clustering (VOSviewer; Van Eck and Waltman, 2016). The resulting body of 101 research studies (about 2.5 studies per year) covered a scattering of topics without a dominant focus. The literature that was impacted by these longitudinal studies consisted of 3,491 scientific publications. Three clusters of topics emerged from mapping the terms used in these publications, which were dominated by (1) syndrome and disorder related terms; (2) autism-related terms; and (3) disability and parent related terms. Topics related to autism and, to a lesser extent, parents showed the strongest increase over time. Topics related to intervention and programmes were mostly linked to the topics disability and parents. Taking into account the science mapping as well as features of the context in which research on intellectual disability takes place, we suggest a collaborative research agenda that systematically links topics relevant for intervention with longitudinal research, in co-creation with families.

Keywords: intellectual disability, longitudinal research, early development, early intervention, systematic review, science mapping

### INTRODUCTION

Intellectual Disability is described in ICD-11 as a Disorder of Intellectual Development (Salvador-Carulla et al., 2011). Intellectual disability emerges during the "developmental period" [usually taken to mean before age 18 years; (American Association on Intellectual and Developmental Disabilities (AAIDD), 2010)], and is characterized by low cognitive ability (IQ < 70) and low levels of adaptive functioning (such as communication, and social and independence skills, assessed using standardized tools). Prevalence studies internationally suggest that ∼1.5–2.2% of children and adolescents have an intellectual disability (Maulik et al., 2011). Children with an intellectual disability have historically been given a variety of labels including "mental retardation," "mental handicap," and "subnormal." While internationally the term intellectual disability is favored, terminology in the UK education system was heavily influenced by the report of the committee led by baroness Warnock on special educational needs (Department for Education and Science, 1978), which proposed to use "learning difficulties" as the generic term (with some distinction of severity in mild, moderate, or severe). Publications like the Warnock report have not only shifted the social construction of having an intellectual disability but also enhanced awareness of critical needs in a significant group in our society. Charting those needs is one of the tasks that researchers in the field have undertaken.

Current social constructions of intellectual disability emphasize low levels of general intellectual ability and associated low adaptive functioning—relative to levels expected from individuals of the same age. Profiles of abilities and associated needs look very different from child to child, but usually the problems in the domain of mental functioning broadly affect activities and participation. In addition, the putative causes of this cluster of needs are many and varied—ranging from specific genetic conditions (e.g., Down syndrome), to socioeconomic circumstances (e.g., extreme poverty or neglect), and environmental toxins (e.g., lead poisoning), with etiology known in a minority of cases (Kaufman et al., 2010). Despite this heterogeneity, the field still categorizes children with intellectual disability, so that needs of this subpopulation of children can be defined on a group basis. Many countries organize specialized educational services with this category of children in mind. Our focus in the current paper, using science mapping methods, is to examine research on the early development of children with intellectual disability, describing themes based on the primary sources on this research as well as the themes within secondary sources that base themselves on the longitudinal research in early development. The focus will be, in terms of the International Classification of Functioning, Disability, and Health (World Health Organization, 2001), on the development of mental functioning, activities, and participation, as these domains are universally affected in people with intellectual disability (in contrast to other body functions and structures). Furthermore, the focus will be on early childhood development, which may be defined as the emergence within the period from conception to age 8 of sensory-motor, cognitive, communication, and social-emotional skills (World Health Organization (WHO), 2012).

There is broad consensus that intervening early is a good thing in support of any disadvantaged child (UNICEF, 2017). The UK Warnock Report (Department for Education and Science, 1978) devoted a whole chapter to children under five that started with a recognition that the early years are a time of rapid development, and that this time of development is as crucial for children with special educational needs as for all children. However, early intervention and support may be even more important for children with intellectual disability than for all other children. By definition, children with intellectual disability have core developmental delays reflected in their performance on IQ and adaptive behavior assessments. As development in general is rapid in the early years, cognitive and adaptive functioning of children with intellectual disability soon lag behind that of their peers even if their rate of development is only slightly slower than average. To help children with intellectual disability to catch-up developmentally, intervention and support needs to start early in life to shift their trajectory of development and avoid further falling behind.

Beyond dimensions that are a part of the definition of intellectual disability, this group of children face multiple other educational, social, and health inequalities. For example, children with intellectual disability are 4–5 times more likely to have mental health problems compared to other children (Emerson and Hatton, 2007). Families of children with intellectual disability are at increased risk for multiple social/economic risks including poverty and exposure to negative life events (Emerson and Hatton, 2007). In the physical health domain, children with intellectual disability are up to 70% more likely to be obese (Emerson et al., 2016), which in turn increases the long-term risks of obesity-related health problems. These inequalities are apparent early in the lives of children with intellectual disability; by age 5 years at the latest (Totsika et al., 2011; Emerson et al., 2016) and likely even earlier. The early emergence of these inequalities in children's lives has given rise to entertaining the possibility that early intervention may have large and longterm impact.

In considering any specific intervention, including early interventions, it is important to be able to draw upon evidence that is relevant and that has sufficient coverage of the multiple, complex facets of intellectual disability. Frameworks for complex interventions suggest that the evidence base should start with theory and modeling research (or understanding the "problem") (e.g., Craig et al., 2008; Thornicroft et al., 2011). This research evidence is then used to design specific interventions that can be tested using robust experimental designs, incorporating mixed methods evaluation, and eventually the testing of the wider scale roll-out of interventions in typical practice. Thus, evidence-based early intervention and early support for children with intellectual disabilities and their families (recognizing that families are the primary context for early development; Department for Education and Science, 1978) would benefit from research on the early development of children with intellectual disability.

From a developmental perspective on intellectual disability (e.g., Hodapp et al., 1990), developmental pathways for children generally apply to children with intellectual disability. The main difference is that the pace with which children with intellectual disability develop along these pathways may differ (especially, may be slower). However, this perspective needs to be tested explicitly in studies on the early development of children with intellectual disability. In addition, the developmental perspective on intellectual disability recognizes that there may also be some divergence from typical developmental sequences most notably in the context of specific genetic syndromes. For example, the genetic disorder Rett syndrome is typically associated with severe to profound intellectual disability and early development in this condition is typified by an early period of developmental regression (Cianfaglione et al., 2018).

Very little longitudinal research had been published into the development of children with intellectual disability before the Warnock committee, and no such research was referenced in their report (Department for Education and Science, 1978). The recommendations from the report regarded attending to the origin and course of the special educational needs of children including those with intellectual disability.

The aim of the current paper was to describe the areas that have received most attention in research on early development in the four decades since the Warnock report. To that end, we adopted a bibliometric approach and first asked what peerreviewed longitudinal research evidence is available on early developmental pathways of children with intellectual disability, what topics of these studies were, and how the topics of this literature are related. Second, we asked what the impact of this longitudinal work has been by mapping the topics of peer-reviewed publications that have cited the longitudinal work, again by describing and depicting the topics and their interrelationships and by examining time trends.

#### METHODS

The review questions were addressed by performing literature retrieval (Liberati et al., 2009) in **two** steps.

#### Retrieval of Longitudinal Studies of Early Development Eligibility Criteria

Publications were selected if these: (1) used as inclusion criterion intellectual disability or a clinical condition with intellectual disability as a part of the phenotype (as focal sample, not as comparison sample; per the goals of this review), (2) reported studies where the aim was to quantify non-experimental change in dependent variables or associations between independent and dependent variables on at least two time points (i.e., truly longitudinal), (3) conducted the first measurement wave before end of the 7th year of life for all children (to be flexible enough to incorporate most international perspectives on the focus period for early intervention), (4) appeared as indexed peer reviewed journal articles or chapters (to focus on peer reviewed primary sources of empirical studies), (5) appeared within the domains of psychology and social sciences or in a journal in the field of intellectual disability (to focus on fields that broadly attend to mental functioning, activities, participation, personal factors, and environmental factors in relation to health conditions and bodily functions; World Health Organization, 2001), and (6) were published before 2018 (to be able to retrieve citing studies in the next step of the research). Publications were considered ineligible if no abstract was available and the full text version could not be retrieved (to enable the investigators to assess eligibility).

#### Retrieval and Eligibility Assessment

Query strings (**Appendix A**) were entered in the bibliographic databases of Scopus and Web of Science, which provide ongoing coverage of the large majority of international peer reviewed journals in the field of special education and rehabilitation. Records retrieved (Web of Science: number of studies k = 920; Scopus: k = 1,016) were entered in Endnote to remove duplicates, after which k = 1,593 records remained. The authors independently coded the titles and abstracts on eligibility criteria 1–3, turning to the full manuscript if information was missing or unclear. This resulted in 120 candidate publications. Reliability of eligibility assessment varied between kappa = 0.79 to 1.00 (k = 50 were double coded). After first screening, candidate publications were fully read to double check compliance on eligibility criteria 1–3, after which 108 publications remained. The final set of k = 101 eligible studies was obtained by excluding 7 studies with dependent variables that fell outside the domains of mental functioning, activities, participation, personal factors, and environmental factors in relation to health conditions and bodily functions (eligibility criterion 5). **Figure 1** provides the PRISMA flow diagram for the study selection and results.

#### Retrieval of Studies Citing Studies of Early Development Eligibility Criteria

Publications were selected if these: (1) cited one or more of the longitudinal studies identified in step 1 (as per the goal of the study), (2) had full bibliographic records electronically available with title, author list, publication year, abstract, keywords, and reference list (to provide the data necessary for science mapping analysis), which limited the search to journal articles.

#### Retrieval

The longitudinal studies (k = 101) retrieved in step 1 were searched in Scopus and Web of Science to identify citing references. Records retrieved (Web of Science: k = 2,494; Scopus: k = 3,448) were exported to a publication database. Duplicate removal led to k = 3,491 unique publications in step 2.

#### Science Mapping

The citing records retrieved in step 2 were read into the software program VOSviewer 1.6.10 (Van Eck and Waltman, 2016) for the construction and visualization of bibliographic networks. This software projects "nodes," such as publications, authors, or terms, in a two-dimensional space based on a normalized index for bibliographic similarity (i.e., link strength), such as the number of co-citations of two publications by third publications or the number of times two terms occur together in the same publication (Van Eck and Waltman, 2014). In addition, the

program performs a weighted and parameterized variant of modularity-based clustering on the link strengths to reveal additional distinctions beyond those that can be derived from the two-dimensional scaling (Waltman et al., 2010). To map the topics and themes in the longitudinal studies on early development, a network was created of co-occurrence of terms extracted by natural language processing of titles and abstracts for nouns and adjective-noun combinations. Only terms that occurred 5 times or more were included. The algorithm ranks the terms found based on the extent to which co-occurrence appears systematic or random, keeping only the 60% most relevant terms. Terms were excluded if these referred to longitudinal research, young children, or intellectual disability (because publications were already selected on that basis), if these described study methods (given the interest in substantive focus), or if the terms appeared trivial (such as type of publication, statistical terms, or country of study).

To map the topics and themes in the literature citing longitudinal work on early development, natural language processing was conducted similarly as for the longitudinal studies of titles and abstracts, now limited to terms that occurred at least 50 times. Terms were excluded if these described study methods (given the interest in substantive focus), or if the terms appeared trivial (such as type of publication, statistical terms, or country of study). The full list of deselected terms can be found in **Appendix B**.

#### RESULTS

#### Longitudinal Studies of Early Development

References to the longitudinal studies of early development identified in step 1 of the study can be found in **Appendix C**. **Figure 2** maps the machine extracted terms describing the longitudinal studies, indicating the weight of each term (by its size), and mean publication year indicated by its color (with redness indicating relatively recent use of these terms and blueness indicating relatively early use of these terms). The links connecting terms represent their rate of co-occurrence. **Figure 2** shows that studies referring to "parenting" are of a relatively recent appearance in the literature, this term being present in titles and/or abstracts 14 times since 1999 (9 of which after 2012). "Context" appeared in this literature since 2001 (k = 10), while other relatively new topics occurred less frequently. "Syndrome" (k = 52), often in combination with "Down" (k = 41), continued to be used throughout the period covered by the longitudinal studies. Of the domains of early development (World Health Organization (WHO), 2012), cognitive, communication, and social-emotional skills were represented, with communication (including language) receiving most attention. The sensorymotor domain was not represented. The considerable scatter in the map, with little evidence of dominant topics among this modest set of longitudinal studies, precludes a coherent overall summary of dominant focus and trends.

#### Bibliographic Impact of Longitudinal Studies

**Figure 3** shows the increase in publications citing the longitudinal studies of early development up until 2017 (the last full year with complete bibliographic data). **Figure 4** maps the machine extracted terms describing the publications that cited longitudinal studies, indicating the weight of each term (by its size), and membership (by its color) of one of the three clusters that were extracted from the weights of the links between the terms. The links connecting terms represent their rate of co-occurrence. Only links with a minimum weight of 50 are displayed.

The green cluster consisted of 39 terms, and was dominated by the term "syndrome," and also, albeit to a lesser extent, by "disorder," "ability," and "individual," reflecting a focus on the diagnosis of individual children. Early development was represented in this cluster with the cognition ("cognitive," "memory") and sensory-motor ("motor") domains. When searching for terms referring to intervention and support, only "patient," "identification," and "treatment" were found. Terms referring to education did not occur within this cluster.

The blue cluster consisted of 32 terms, and was dominated by the terms "autism," "autism spectrum disorder," "ASD," and "skill," reflecting a focus on people with autism spectrum disorders and their skills. Early development was represented in this cluster with the domains of cognition ("joint attention," "cognitive development," "learning"), communication ("language," "language development," "speech," "gesture," "vocabulary," "word," "expressive language," "communication"), and social-emotional skills ("social interaction"). No terms belonged to this cluster that referred to intervention or support, nor to education.

The red cluster consisted of 44 terms, and was dominated by the terms "disability," "family," "parent," and "mother," reflecting a family focus. In this cluster, early development was represented with the social-emotional skills only ("friendship," "peer," "social competence," "social skill"). When searching for terms referring to intervention and support, these were also included in this cluster, such as "effectiveness," "efficacy," "practice," "professional," "program(me)," "service," and "support." Terms referring to education were also found in this cluster, such as "education," "school," "student," "special need," and "teacher."

To discern the most recent research on which longitudinal studies have had impact, **Figure 5** overlays the clusters from **Figure 4** with mean publication year. There is a clear trend of an increasing number of studies on autism spectrum disorder that cites longitudinal research on young children with intellectual disability. Of the terms referring to intervention and support, "efficacy" (k = 93), "effectiveness" (k = 97), "practice" (k = 311), and "support" (k = 705) stand out as being used in relatively more recent literature that cited longitudinal research. Of the terms referring to education, only "school" (k = 609) and "student" (k = 142) appear in more recent literature citing longitudinal research.

### DISCUSSION

Applied scientific research findings may improve understanding of a phenomenon or the processes associated with a problem's emergence or maintenance. However, the delay in time for such scientific findings feeding into interventions and practice can be substantial—perhaps as much as 20 years (Contopoulos-Ioannidis et al., 2008). Evidence-based interventions are best informed by scientific findings and theory (Craig et al., 2008; Thornicroft et al., 2011), and there is critical need for evidence based early intervention practices for children with intellectual disability (as inequalities affecting them emerge very early in development). Therefore, the research identified in the current study on the early development of children with intellectual disability is of substantial importance both scientifically and in relation to policy and practice.

In the systematic review stage of the current study, we identified 101 longitudinal (at least two time points, first data point before children turned 7 years old) research studies addressing educational, psychological and related development of children with intellectual disability. This body of work has been published over more than four decades. Thus, although the total body of relevant work appears at first to be significant, the number of studies published on average per year is a modest 2.5. Running our literature searches without restricting the outputs to studies including terms relating to "intellectual disability" (as a quick search to provide context for what we have found) led to an almost 20-fold larger corpus of potentially relevant papers on early development. This all suggests that the early development of children with intellectual disability has been relatively neglected internationally. Using science mapping approaches to examine the focus of the 101 studies also suggests a lack of coherence or strategic direction for the field of early development in children with intellectual disability. Terms in the records of included studies (**Figure 2**) were varied and showed few trends over time. Although still weak trends, there was some indication of reference to parenting (and to a certain extent to family) in the

FIGURE 2 | Map of terms co-occurring in titles and abstracts of longitudinal studies of early development (*k* = 101), with distance between terms indicating strength of the links between terms and color indicating the average publication years of the articles in which these terms occurred.

more recent research literature. This may signal an increasing focus or recognition of the role of parents and the family in early development of children with intellectual disability, reflecting programmatic and collaborative efforts by people in the field (e.g., Blacher; Baker; Hauser-Cramm). However, given the relatively small number of total studies, this weak trend may have been driven purely by a small number of research groups publishing in the field. Also of note is that 41 of the 101 studies referred to Down syndrome. Although an important sub-group in the population of children with intellectual disability, this relatively large amount of studies referring to the group with Down syndrome seems to represent a relative neglect of other sub-populations and potential ascertainment bias in the current evidence base.

Publications citing the 101 core studies have been increasing over time, especially over the most recent 5 years to 2018 (**Figure 3**). These data may indicate a growing and recent attention to the early development of children with intellectual disability, or at least in research addressing this topic. The related aspect of the science mapping (focus and trends of the 3,491 studies citing the original 101 studies) showed three clusters of research that have been citing studies about early development of children with intellectual disability (**Figures 4**, **5**). The first cluster shows that research referring to autism spectrum disorder

between terms indicating strength of the links between terms and color indicating membership of the clusters derived from link strength.

has been citing studies of the early development of children with intellectual disability, and that this is a recent trend in particular. It is important to note that we did not search for research studies focused on autism (in the absence of intellectual disability) as our interest was in research on the early development of children with intellectual disability (also including those who may have an additional diagnosis or label of autism). However, drawing on research on the early development of children with intellectual disability in the autism literature may reflect a number of scientific trends. For example, this may reflect a simple increase in the volume of autism research as it has become a funding priority internationally. Furthermore, children with intellectual disability and Down Syndrome in particular are often used as a comparison group in studies focusing on children with autism (e.g., Baranek et al., 2019). The autism research citing studies of early development of children with intellectual disability was not associated with frequent use of intervention-related terms. Clarifying linkages and trends regarding autism and intervention will require more comprehensive mapping of the research on early development in children with autism.

A second cluster of terms from citing studies in **Figure 4** derive from medical terminology including "syndrome," "disorder," and "ability." Intervention-related terms did also occur in this cluster but again they can also be seen to have a more medical flavor (patient, identification, treatment). There was also a clear time trend for this cluster of more medical terms from citing studies (**Figure 5**) appearing in older literature. Our searches sought out research of a primarily psychological, social or educational nature on the development of children with intellectual disability. Therefore, it is of interest that a more medically-focused cluster of citing studies was found. However, the fact that this cluster of terms was found in older citing research may reflect a general move away from medical models of disorder to an increasing functional, activity, and participation focused understanding of disability (World Health Organization, 2001; Bertelli et al., 2016).

The third cluster of terms from citing studies represents studies focusing on environmental factors. This third cluster was dominated by terms relating to family [including parent(s)], but also included multiple terms relating to social dimensions of intervention and to education. Thus, there is a body of research citing studies of the early development of children with intellectual disability that has a dual focus on families, and on intervention and supports. This body of work has been present in the field for some time, but does not have such a strong recent trend (in the same way that autism is showing) (**Figure 5**). Given the key role of the family in early child development, one might have expected increasing interest in the developmental environment, as well as in the implications for family life. However, the science mapping of citing studies did show a clear time trend for increasing occurrence of terms in citing studies that referred to intervention and support (efficacy, effectiveness, practice, and support) (**Figure 5**), showing that intervention as a component of the environment appears to integrate insights on development and considerations of the family context.

In summary, we found a disappointingly small body of international research literature on the early development of children with intellectual disability but on a broad range of subjects (suggesting lack of focus). Science mapping analysis revealed some encouraging trends in the use of research on early development of children with intellectual disability. Most significantly, more recent research citing studies of early development in intellectual disability were more likely to also make reference to intervention and support. Perhaps of some concern was that, despite dominant terms relating to the family and child within the family in the 101 early development studies themselves, recent citing studies were more likely to be referring to terms relating to autism than to the family. Our analysis suggests a priority for more research on the early development of children with intellectual disability.

#### Toward a Road-Map for Early Developmental Research in Intellectual Disability

Funding, organizing, and maintaining longitudinal studies in all fields is a considerable challenge. In intellectual disability, there are at least three additional challenges. First, the prevalence rate of intellectual disability even in childhood is low overall (Maulik et al., 2011), and these numbers drop dramatically when breaking down this population in subpopulations with distinct known etiologies (Kaufman et al., 2010) let alone phenotypes. Finding sufficient numbers of young children and their families to achieve reliable estimates of developmental pathways and test hypotheses about developmental mechanisms with sufficient statistical power will, therefore, require additional resources and/or collaboration across research groups and countries. Second, ascertainment of intellectual disability when children are very young is fraught with problems. Intellectual and adaptive functioning of young children show variation across individuals and time, and time is needed to be able to conclude that functioning remains in the range for intellectual disability. Existing studies have typically focused on populations (and "diagnoses") that may be more typically applied to young children and are likely strongly associated with identified intellectual disability as a child ages. In particular, the constructs of Global Developmental Delay or developmental delays in key domains (e.g., language and/or social behavior) may be easier to identify in young children. Some etiologies (e.g., Down syndrome) are also easily identified without even the need for complex biological testing. Third, children who have lower levels of cognitive and adaptive functioning (especially those with severe to profound intellectual disability) present researchers with challenges given the paucity of measures of development and opportunities to test children to establish their developmental level.

These three challenges, and likely others, may explain the relatively small amount of research on the early development of children with intellectual disability. Despite increasingly clear data on the developmental inequalities affecting children with intellectual disability, it may also be the case that international policy has yet to fully recognize the developmental needs and priority for early intervention for this population of children. Without policy prioritization, funding for research on the early development of children with intellectual disability is also unlikely to be easily available, resulting in fewer incentives for researchers to focus their energy and careers in the field of intellectual disability. We propose two inter-linked strategic developments to increase the volume and relevance of research on the early development of children with intellectual disability: Partnership and co-creation; and innovative and creative research designs and methods.

Partnership and co-creation is needed at a policy level, across countries and cultures, and most importantly between families of young children with intellectual disability and researchers. In terms of the latter, our science mapping did not identify a core of research referring to co-creation, co-production, or co-design with families of children with intellectual disabilities. Thus, families may not as a matter of course be involved in contributing to research questions about early development or partnering with researchers in longitudinal research processes. An alternative explanation is that co-production and co-design may have been happening in the research literature but that the way research is reported by scientists does not emphasize these features. Either way, a stronger partnership between families and researchers is required. Closer connection with families will not only ensure directly relevant questions about early development of children with intellectual disability are asked, but will mean that the findings of early development research might be more rapidly applied (at least by families, who have a considerable interest in ensuring the best possible developmental environment for their child). Examples of coproduction and co-creation by parents, professionals, and researchers are emerging in neighboring fields, leveraging the opportunities of digital platforms (e.g., a digital platform for asking questions, finding information, and preparing for consultation with professionals for parents of children with physical disabilities; Alsem et al., 2017).

Families of young children with intellectual disability, and researchers in the field of intellectual disability, also have a direct, current and future shared interest in influencing early intervention/early education policy and also research funding policy around the world. Thus, we call for families and researchers to work together strategically to bring early years development and the need for early intervention to the attention of policy makers who can ensure that the early development of children with intellectual disability becomes a policy priority. Research is also needed on developing and evaluating models of co-production between families and researchers, and the putative impact of different approaches to this partnership on policy. With attention to children with intellectual disability in early years/early education policy, families and researchers might then also be able to work together to approach and influence research funders crossnationally. In addition, families as partners will play a key role in the training and development of researchers working with young children with intellectual disability. To keep the research questions relevant, and to ensure that research methods are inclusive (especially considering the challenges associated with research with children with severe to profound intellectual disability), close connection and partnership with families are crucial.

One strategy to address the challenges outlined earlier (of a rare condition like intellectual disability, methods to ascertain likely intellectual disability early in development, and creative methods to include children with more severe intellectual disability) is to foster scientific partnership. This requires not only that researchers join forces, but research funding agencies, organizations representing and working with families, and regulators also participate in such teams (cf. Webster, 2019, for the neighboring field of special education). International co-operation could increase available sample sizes, increase the overall size and relevance of research through collaborative funding arrangements, and enhance agreement to use similar measures and tools. For example, in the Netherlands, a minimal data set was developed to facilitate interoperability and reusability of data to answer questions, for example, affecting smaller numbers of children such as those with rare genetic conditions associated with intellectual disability (Kunseler et al., 2016). Research teams working together could also share and plan to address key questions in the field strategically (e.g., one team in one country seeks funding to work on one problem, and a research team in another country works on another problem thus creating synergy; Salas et al., 2018). While co-production needs to be carefully considered on a case by case basis (Oliver et al., 2019), in intellectual disability research many instances can be found where the benefits of co-production will outweigh these costs.

The second area of strategy to change the trajectory of research on the early development of children with intellectual disability is to take advantage of new and emerging research methods and designs. We suggest four general approaches that would benefit early development research in intellectual disability. First, countries around the world have been investing more in administrative data across multiple domains of public policy, but including children and families. Early development research on children with intellectual disability would benefit from international standards for data to gather about young children that would allow those with an intellectual disability to be identified with some confidence. Second, many countries also invest in large population-based studies of children and families. It is possible in some of these to identify children who are likely to have an intellectual disability and related developmental conditions and thus to uniquely consider matters of child development at a population level (cf. Totsika and Hastings, 2012). When making these national investments, it would not take much additional effort for the designers of population surveys to include methods that would allow children with intellectual disability to be more easily identified. Exclusion from population level surveys is in any case likely inconsistent with the rights of people with ID to be included in matters related to their health and well-being (United Nations, 2006). Third, although the consent and data sharing issues will need to be considered very carefully, families of young children with intellectual disability across collaborating international research groups could be approached to join national or international research registers (cf. the Netherlands Autism Register: www.nar.nl; Grove et al., 2018). Fourth, and related also to the previous point, a repository of protocols, measures and methods in longitudinal studies of young children with intellectual disability is needed to make sure that creative and excellent research approaches are more widely used, researchers do not have to "re-invent the wheel," and that data are more easily combined to consider new research questions without the expense of commissioning new research studies.

## CONCLUSION

In the current paper, and science mapping study, we have argued for the importance of basing early interventions for children with intellectual disability on the foundations of high quality developmental research. Mapping the use of early development research in intellectual disability, we found only moderate evidence of links to research on intervention and arguably a concerning disconnection. However, our analysis gives only a partial picture of the state of early developmental science in intellectual disability. A related systematic review and synthesis of early intervention research in intellectual disability would be informative in this regard. It is possible, for example, that early interventions in intellectual disability have been directly informed by mainstream developmental theory and/or research studies of typical development.

Given that we have argued that developmental processes may be relatively universal although likely at a slower pace in intellectual disability, does it matter if there is both a lack of early development research in intellectual disability and a potential disconnection with early intervention science? We contend that the answer to this question is: Yes, it does matter. In particular, it is clear that the social (and especially the family) environment both partially determines and also interacts with children's development. This means that the development of children with intellectual disability is likely shaped by different environmental influences than for other children at the same developmental age. For example, puberty and the social/family response to developing sexuality in a physical sense may occur for adolescents with intellectual disability when their social and communication functioning lags behind their peers. In addition, families' experiences are different: their child with intellectual disability may engage in challenging behaviors that are not only uniquely stressful, but lead to considerable public stigma for families. Modeling the effects of any intervention is thus not as simple as applying a one-size-fits-all "developmental delay" approach. Lacking direct research evidence about the development of children with intellectual disability, any intervention not informed by such research may have unexpected, and even damaging, outcomes.

#### REFERENCES

Without underpinning developmental research, it is also difficult to understand how or why early interventions are working successfully. This will be especially limiting at the stage where evidence-based early intervention strategies need to be rolled out widely in practice. Successful implementation will, in part, be determined by strategies to maintain the changes in developmental and family processes that are targeted by the intervention. While the Warnock report in 1978 did not focus on the critical need to understand developmental mechanisms in children with intellectual disability, the findings of the current study suggest continuing relevance of high quality longitudinal work.

#### DATA AVAILABILITY

The bibliographic datasets generated and analyzed for this study can be fully obtained using the search commands in the **Appendix A**, using proprietary databases of Thomson Reuters (Web of Science) and Elsevier (Scopus). The bibliometric map data with which interactive versions of the maps (**Figures 2**, **4**, **5**) can be created are open and can be accessed at https://osf.io/ s7hde/ (doi: 10.17605/OSF.IO/S7HDE).

#### AUTHOR CONTRIBUTIONS

CS and RH contributed conception and plan for the review. CS collected bibliographic data and performed the bibliometric analyses. CS, MvR, and CES scored abstracts for eligibility and prepared the flow chart and supplementary tables. CS and RH wrote the first draft of the manuscript. All authors contributed to manuscript revision, read and approved the submitted version.

#### FUNDING

Work on this manuscript was supported by a LEARN! Postdoc fellowship to MvR and a research grant from Cerebra to RH.

#### SUPPLEMENTARY MATERIAL

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/feduc. 2019.00041/full#supplementary-material

**Conflict of Interest Statement:** The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Copyright © 2019 Schuengel, van Rest, Stanford and Hastings. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

# The Changing Perception of Communication Needs—A Litmus Test for the Warnock Legacy

#### James Law\*

*Department of Speech and Language Sciences, School of Education, Communication and Language Sciences, Newcastle University, Newcastle upon Tyne, United Kingdom*

Meeting Lady Warnock<sup>1</sup> at the final conference for some work commissioned by the DfEE/NHS in 2001, she said that one of her greatest concerns about her earlier report is the fetishisation of the statement of education needs. It was, of course, true that with the "statement," as it came to be known, was often equated with her report, and triggered a rather legalistic culture with all the accompanying processes of tribunals and appeals. Nowhere was this more apparent than in the "border disputes" between health and education as to who was responsible for children with speech, language and communication needs (SLCN), a term which only emerged 25 years after her report was published. In this paper it is argued that the nature of disability has changed since Warnock. Communication disability is now one of the most disabling conditions and communication access at least as important as physical access. It is argued that communication should perhaps be seen as a litmus test<sup>2</sup> for whether the integration of children with support needs in the classroom is achievable. Although Warnock resisted diagnostic labels in favor of "needs" there has been a burgeoning market in measures of cognition, language and behavior since the 1970s. The paper goes on to look at the ways that the term SLCN has played out across health and educational services and ends up comparing the recommendations in the original report with those in the recent (2018) *Bercow - 10 Years On* report.

#### Keywords: language, communication, speech, child, public health

The Warnock report (Warnock, 1978) was a brave attempt to bring together all the issues associated with the history of special education needs and the modern priorities (in the 1970s) of the children and young people concerned—the first report to do so for half a century. In attempting to capture the needs of all children, the report often lacked specificity—to be fair the authors are clear that this is what they had planned—but this has to be offset against the range of issues that they do cover. The main recommendations or what the report calls their "first priority" are improved provision for children under 5 years, for young people over 16 and teacher training. Of these, the first has made considerable progress, the second and third probably less so. But beyond these first priorities there are a host of other recommendations, some of which look a little strange in hindsight precisely

#### Edited by:

*Julie Elizabeth Dockrell, UCL Institute of Education, United Kingdom*

#### Reviewed by:

*Lorella Terzi, University of Roehampton, United Kingdom Konstantinos M. Ntinas, Ministry of Education, Research and Religious Affairs, Greece*

> \*Correspondence: *James Law<EMAIL_ADDRESS>
#### Specialty section:

*This article was submitted to Special Educational Needs, a section of the journal Frontiers in Education*

Received: *27 November 2018* Accepted: *06 May 2019* Published: *29 May 2019*

#### Citation:

*Law J (2019) The Changing Perception of Communication Needs—A Litmus Test for the Warnock Legacy. Front. Educ. 4:42. doi: 10.3389/feduc.2019.00042*

<sup>1</sup>Throughout this piece, reference is made to "Warnock" as if it refers to the individual rather than the eponymous report. In fact, this just reflects a common understanding which takes the name of the chair of the relevant committee as its title. Clearly the findings to which reference are made here were generated by the committee and the research that it commissioned rather than the individual concerned.

<sup>2</sup>The term "litmus test" refer to the UK understanding of this term which stresses the importance of a single factor in establishing a finding.

because special needs have moved forward so much. We have no mention of inclusion but a highly differentiated version of integration which prefaced later changes. The discussion of children speaking more than one language, a critical educational concern to most modern teachers, is confined to Welsh and Gaelic which might surprise modern readers. Inevitably in such reports there are contradictions but, of these, the most substantive is the tension between belief and practice in the identification of children. On the one hand we have the statement that "statutory categorisation of handicapped pupils should be abolished" (para 3.25) but on the other we have a recommendation for what became the lightening rod of categorization in education for many years.

A system of recording as in need of special educational provision those children who, on the basis of a detailed profile of their needs..are judged by their local education authority to require special educational provision not generally available in ordinary schools (para3.13) –

One area which attracts considerable attention nowadays is speech, language and communication (SLC) skills, which pervade the issue of disability in general and access more specifically. SLCs are seen as critically important both in their own right as far as parents, professionals and children are concerned. They are also critical as an earlier marker of a wide variety of neurodevelopmental disorders (Ek et al., 2012) and in terms of access more generally, access to education, the curriculum, friendship groups and later employment. Indeed, one could reasonably argue that while "handicapped" children experience a great many difficulties in terms of mobility, cognition etc. it is their communication skills which represent the most salient obstacle to their effective inclusion in society and this is getting more prominent as society becomes more technologically sophisticated. There are a number of references to speech and language in Warnock but these are generally in terms of "speech and language disorder" or in terms of "speech and language therapy" rather than as a key dimensions of risk, inclusion and access.

It is argued below that the functional disabilities associated with speech, language, and communication are really one of the best tests for the Warnock legacy. Four issues are identified where this is particularly true,

## THE CHANGING NATURE OF DISABILITY IN SOCIETY

As Warnock indicates, disability, and indeed special needs and the way that society responds to them, are not static. They change as society changes and, indeed, with the individual's response to that society. One key aspect is the needs of the workforce and the role that education, although a general "good" in Warnock's parlance, plays in helping children acquire the necessary skills to enter the workforce. Many disabilities may not have been so apparent in an early industrial society but have emerged as the needs of that society changed. The best example of this is language and communication skills which have become of paramount importance in our increasingly white collar world.

"Before the Forster Education Act (of 1870) the needs of mentally handicapped children were little recognised. Mental disability was for many children, no substantial handicap in coping with the simple demands of everyday life in a largely uneducated and relatively uncomplicated world, and institutional provision was available for those who needed looking after. Their needs first became apparent after 1870 when large numbers of children of below average or poor intellectual ability entered public elementary schools. Many of them made scarcely any progress and their presence hindered normal teaching" (ibid p12 2.16)

Some 20 years on from Warnock, this issue was articulated even more clearly in a paper related to employability and speech and language needs.

The fitness of the person of the 21st century will be defined, for the most part, in terms of his or her ability to communicate effectively. Societal self-interest will drive an increased allocation of resources to optimize the communication ability of its population, for this is how society prospers. Communication disorders will be a major public health concern for the 21st century because, untreated, they adversely affect the economic well-being of a communication-age society. We have seen that manual labor–based employment has diminished, in terms of percentages, in the country during the past century, but massive unemployment has not resulted because those jobs have been replaced by communication-based jobs.(Ruben, 2000 p.243),

Globally, workforces have changed over the past 60 years with a sharp rise in individuals employed in service industries contrasted with a decline in employment in production industries. Thus, in Australia, half of the workforce was "blue collar" in 1966, only 8% in 2001. This inevitably presents new challenges. The Australian Industry Group (2013) reported - "40% of the workforce had communication skills below the minimum standards required to perform their jobs." And now with the hollowing out of the middle classes (fewer jobs for highly educated people) and widening social inequalities, the salience of oral language skills becomes even more pronounced

During most of human history a person with a communication disorder was not thought of as "disabled." The shepherds, seamstresses, plowmen, and spinners of the past did not require optimal communication skills to be productive members of their society, as they primarily depended on their manual abilities. Today a fine high-school athlete—a great "physical specimen" who has no job and suffers from poor communication skills is not unemployed, but, for the most part, unemployable. On the other hand, a paraplegic in a wheel chair with good communication skills can earn a good living and add to the wealth of the society. For now and into the 21st century, the paraplegic is more "fit" than the athlete with communication deficits. (Ruben, 2000, p. 243)

Ruben was writing in the nineteen nineties but, in many ways, what he said has been amplified by computing in general and artificial intelligence in particular. This puts those with communication needs under even greater pressure, competing with Alexa, Echo and myriad other helpful household items in the internet of things which are starting to dominate our lives. But such implements, for all their convenient wonder, are still relatively crude and function in a very instrumental manner. They provide information or respond to demands but are still not able to interact very effectively. The symbolic imagining of other people's worlds, the capacity to inhabit the shoes of others, remains elusive to the technology. Good effective interactive communication remains at a premium and is likely to become even more so, further handicapping those who struggle with these types of skills. The digital gains of recent years have done much to relieve the disabilities of people who would traditionally been considered "at risk" in society for physical or those gains have done little to help those with functional speech, language and communication needs. This is not just a matter of literacy, as is sometimes assumed, but oral language skills and it is therefore not surprising that many schools are now making this a priority for all children and especially those with more marked, disordered, speech and language—in a way that they may not have done in the late seventies.

#### THRESHOLDS AND CLASSIFICATION

One of the distinctive characteristics of the Warnock report was the nuanced nature of the discussion of disabilities both in their characteristics and the way in which they interacted with the child's environment. The report highlights that two children, with similar profiles, might be more or less disabled in different family or indeed school contexts. But inevitably the need to decide which children do and which do not need extra funding to support their needs leads to a splitting of the population in one way or another. Warnock draws a distinction between those with major handicaps, many of which have names freely employed by Warnock but difficult for cultural reasons to use nowadays, and those with what the report terms 'no substantial handicap'. This takes us to measurement and what happens if your assessed performance falls on one side of a designated threshold rather than the other.

Warnock talks about the lack of ability to measure children's abilities. This may have been true at the time but, since the seventies, there has been a considerable increase in the number of cognitive factors and corresponding measures for all sorts of different aspects of a children's abilities (Frazier, 2007; Dockrell et al., 2017). This is to be commended because it helps with measurement for identification, diagnosis and, indeed, intervention outcomes, although, as Dockrell et al. indicate, many of these measures remain relatively poorly evaluated and are sometimes used interchangeably for diagnosis and outcomes, for example. The challenge is that the increase in the number of measures then allows us to detect differences between groups of children and those patterns are then used to determine a group of children with isolated "specific" problems and this is especially true when general intelligence is involved. Of course, these conditions are only really specific if we are clear that all the other areas have, in fact, been measured and found to be "within normal limits." In practice, there are high level of comorbidity in all developmental disorders (Bax and Gillberg, 2010) and many are only notionally "specific." This has long been recognized as a characteristic of developmental language disorders (Hill, 2001; Carpenter and Drabick, 2011; Tomblin and Mueller, 2012). An obvious example would be the organizational and coordination difficulties of children with specific reading difficulties or dyslexia and the same would be true of developmental coordination disorder, dyscalculia etc.in the way that they have been traditionally characterized (Verhoeven and Van Balkom, 2004). There has, of course, been considerable discussion about whether these concepts are traits or dimensions (Coghill and Sonuga-Barke, 2012), but less on how these can be shown to map onto need or indeed how need should be measured.

A case in point is the identification of children with speech and language difficulties which are specific to those domains but otherwise without associated difficulties. First identified in the early nineteenth century (Reilly et al., 2014) these children were a neurological curiosity for many years and it was not until the 1945 Education Act in the UK that they were identified as being potentially in need of special education. A host of different terms have been used to describe the disorder—congenital childhood aphasia, developmental dysphasia, specific language impairment etc. The key components of such conditions are rarely the same and thresholds also differ with some authors identifying children with language levels two or more standard deviations below the mean (World Health Organization, 1992), and others taking more liberal cut-off such as −1.5 standard deviations, the 10th centile (Tomblin and Nippold, 2014), −1 standard deviation (Conti-Ramsden et al., 2001), or with an overall language age (LA) at least 12 months lower than their chronologic age (CA) or their performance mental age (MAP), whichever was the lower (Stark and Tallal, 1981). Consensus amongst academics and practitioners is clearly key. Yet the evidence suggests that academics and indeed those commissioning services are often much happier with clearly defined categories than practitioners who are often much more accepting of "need" as a defining category.

Interestingly in the last 3 years this issue has led to a consensus project pinning down the criteria for Developmental Language Disorder (DLD) (Bishop et al., 2016, 2017). While many are happy to work with this broad term (DLD) with its emphasis on functional outcomes many prefer the term Speech, Language and Communication Needs. Only time will tell whether this leads to the term DLD being adopted in the international classifications systems such as the DSM and the ICF or whether it will follow Asperger's Syndrome and be replaced (McPartland et al., 2012). In many ways Warnock's position, eschewing lower level categories, is probably wise from a pragmatic point of view as can be seen from the report's discussion of terms such as "delicate" which have entered and exited the special needs vocabulary leaving barely a trace. In many ways the academics desire for cognitive specificity is offset against the broader concept of need that practitioners in both education and health have to deal with.

#### EDUCATION AND HEALTH

Speech, language and communication are, by their very essence, concepts which are relevant to both educational and health services. These skills clearly underpin most of what takes place in the classroom, they are closely linked to literacy, to many aspects of attainment and to social inclusion and, as indicated above, to employment prospects. But equally they are an indicator of healthy development and well-being more generally. Poor communication skills are commonly associated with mental health difficulties and they are also commonly associated with a wide variety of neurodevelopmental difficulties—autism spectrum disorder, cerebral palsy learning disabilities etc. Almost by definition SLCN straddles both services.

Service provision is at the root of the Warnock recommendations as it will always be for those with a focus on improving the experience of "handicapped children and young people" moving through school. Although the context of the report was always the school, there was an awareness of the importance of speech and language, often framed as a speech and language therapy in referencing the Quirk Report (Quirk, 1972) which preceded Warnock and had a considerable impact on the way speech and language therapy services were developed. Although the government of the day did respond to the report, and the number of those qualifying as speech and language therapists increased after its publication, provision for children needing speech and language therapy remain something of a cinderella service relative, for example, to services directed toward literacy or latterly autism. The saliency of services for children with SLCN increased throughout the eighties and nineties. This was partly as the result of pressure from parents from the positive experience of such support in schools and the growing evidence base supporting speech and language interventions.

However, to be fair, these issues were driven by the statement of educational needs and the litigious culture it created. Throughout the eighties and nineties this led to a range of "border disputes" as services squabbled over responsibility for the implementation of recommendations made in the statement and this had its greatest impact for children with what were often considered more moderate difficulties. Nowhere was this more pronounced than in the management of children with speech and language disorders who repeatedly fell between the stools of health and education (Law et al., 2000). The increasing emphasis on parental empowerment, the improving status attached to disability and the way that services were enshrined in law meant that parents began to use the tribunal system and the law to settle such disputes. In turn, this resulted in a good deal of acrimony, parental stress and wasted resource.

In the end, the Departments of Education and Health in England and Wales came together at the end of the nineties to commission a report on how services should develop (Law et al., 2000). This made a number of recommendations about the common use of terminology, the role that speech and language therapists should play in schools and about the commissioning of these services (joint health/education budgets etc). In turn, this led to a number of papers about different aspects of the services, for example about the role that parents felt that they should play in the process (very much in the spirit of Warnock) (Band et al., 2002 and later Hambly, 2014). But it was soon clear that the pressure within the system required a more substantive initiative to drive the issue of speech language and communication needs forward. This led to the publication of the Bercow report (Bercow, 2008) and then the government's response, the Better Communication Action Plan (Department for Children, Schools and Families, 2008) and the Better Communication Research Programme (BCRP) (Lindsay et al., 2009, 2012).

To a great extent these initiatives shifted the emphasis away from speech, language and communication needs as a health concern to one of central concern to schools. Alongside these initiatives language and communication were increasingly being identified as a key issue by the government's What Works centers, notably the Early Intervention Foundation (EIF) and the education Endowment Foundation (EEF) (Law et al., 2017a,b). While educational practice related to communication needs has been an interest in some quarters for many years, such initiatives have moved communication and language to the center of the stage as far as early years education policy is concerned in England at least. Furthermore, they have broadened its application still further, drawing these skills to the attention to a much wider policy audience and to local government officers planning local services. Warnock referenced the Court Report (Court, 1976) and the changes that were taking place with the development of community pediatrics and the need for child guidance clinics to which children should be referred if they had emotional and behavioral problems. Reference is also made to the way that hospitals and schools were historically collocated to facilitate the management of children with both education and social difficulties but the presumption is that education is the focus of the report and that the other aspects just happen because the child has clear medical needs. This picture has clearly changed considerably.

Over the same period there has been a remodeling of the statement of special educational needs which has now been replaced in England by the Education and Health Care Plan (EHCP) (DFE, 2014); (https://www.gov.uk/children-withspecial-educational-needs/extra-SEN-help). Like the statement this was intended to result in an integrated plan with the child's needs at the center and different agencies feeding in specific details about different aspects of the child's development (i.e., Cognition and learning, Communication and interaction, Social emotional and mental health and Sensory, and physical needs). The criteria for this level of funding was rather stricter than for the statement and it was not easy for children SLCN to receive such a plan except as part of another condition. Parental feedback on the process has been well-documented (Adams et al., 2017). The number of children with EHCPs is relatively stable at 2.8% (DfE/ONS, 2017) but a further 11.6% are deemed to be eligible for SEN support and of these the second largest proportion after moderate learning difficulty is SLCN. The corresponding figures for 2010 ie when the original SEN statement was still in place was 2.7 and 18.2%, respectively, suggesting the reduced eligibility for support at the less severe end of the distribution. By contrast, the highest proportion of those with EHCP, by a long way, are children with autism spectrum disorders. Yet even with this tightening of eligibility the suggestion is that authorities are not able to cope with the volume of demand and 40% of authorities indicated that they are not able to meet the 20 week target for completion set and over 6,000 cases had taken over a year https://www.bbc.co.uk/news/education-46658243. Furthermore, the number of parents having to resort to tribunals nearly doubled to 2000 in the 3 years after 2014 when they were introduced suggesting that many of the problems with the SEN statement are recurring. Interestingly Lady Warnock herself had a number of reservations about the ECHPs when they were introduced (https://www.tes.com/news/warnocks-5-point-plansend) particularly because there was so little transparency about the criteria used by local authorities, mirroring the threshold discussion above.

Although the clinical dimension for children with the most marked "medical" needs remains, there has been a further shift toward a more "population" approach to childhood disability. One of Warnock's key recommendations is that special education needs to be extended downwards in to the preschool period and upwards into post 16 education. To a great extent this happened as far as the identification of the children with the most marked difficulties were concerned, in collaboration with the developing "child development" services offered by community pediatricians, clinical psychologists, speech, and language therapists etc. In recent years across the UK, national educational systems have increased services to younger and younger children, perhaps best illustrated by the English "two year offer" for more socially disadvantaged children https://www. foundationyears.org.uk/2011/12/2-year-old-offer/. The result of this downward extension of activity is that the boundaries between what is a special needs issue and what is developmental variation for which support may be valuable, have become increasingly blurred. In part this is because it means that the purview of the child health nurse or health visitor services effectively crosses over with that of those delivering the new early year's services. Of course, this emphasis on the very young child, reflecting the increasing awareness of the importance of the home learning environment (Melhuish et al., 2008; Kelly et al., 2011), influences the role played by educationalists because they need to engage with the context in which the child is growing up i.e., the family—rather than exclusively the performance of the child in class something which is especially salient in the early years. Warnock has very little to say about the social determinants of educational attainment which has been shown over recent years to be so instrumental in terms of the outcomes achieved (Pfeffer, 2008; Bukodi et al., 2014). Awareness of the gap in attainment by the time children start primary school has fostered an increasing interest in the development and measurement of early skills and thus the identification of thresholds of what is and what is not "typical" development. A corollary of this is a focus on parenting and on promoting "parent child interaction" (Kiernan and Mensah, 2011; Landry et al., 2012). This, in turn, has led to a development, not foreseen by Warnock, but increasingly becoming a driver in the early years is the identification of speech and language as a public health issue rather than just a withinchild concern (Beard, 2018). For a condition to be considered a public health problem it must place a considerable burden on society, a burden that appears to be increasing. The burden must be distributed unfairly (i.e., certain segments of the population are unequally affected) and there must be evidence that early preventive strategies could substantially reduce the burden of the condition (Schoolwerth et al., 2006). Increasingly there is an awareness that child language does fulfill these criteria (Law et al., 2013, 2017c; Wylie et al., 2014).

Nowhere is this seen more clearly than the concept of school readiness. Over the last few years a series of documents have highlighted the importance of very early child development and school "readiness" as core life skills. These have been shown to lead to a host of later benefits in education, socialization and employment (Bercow, 2008; Gross, 2008; for examples see: Allen and Duncan Smith, 2008; Field, 2010; Marmot, 2010; Allen, 2011; Save the Children, 2014a,b,c). A child's ability to understand and use oral language is arguably the most important element of school readiness. The crucial transition to literacy in the first 3 years of school is not likely to be successful without wellestablished language skills (Law et al., 2017a,b).

In terms of the burden to society it is clear that many children with limited language skills are already in receipt of additional resources in school. In particular, when their difficulties are associated with poor school achievement and mental/health behavioral difficulties (Cohen et al., 1998; Law and Elliott, 2009), often leading to long term consequences (Beitchman et al., 2001; Hartshorne, 2006; Schoon et al., 2010). Children with DLD are also likely to struggle with transitions between schools and into the workforce (Snow, 2016). Low literacy levels impose a range of direct and indirect costs on governments, industry and communities and are difficult to rectify (Industry Skills Council of Australia, 2011). Approximately 8 per cent of children at school entry may have DLD (Norbury et al., 2016), making it as prevalent as childhood obesity (reported to be 7% Australian Bureau of Statistics, 2009) although this figure is likely to be much higher once children with less pronounced difficulties are included (Locke et al., 2002; Law et al., 2011) and when children across from across the social spectrum are compared (McKean et al., 2018). Access to services was an issue not directly addressed by Warnock but it is clear that it is not easy for all children to access the services they need and it is often the families who are most in need of these services who access them the least (Moore et al., 2015) and cost, availability and accessibility may also be issues (Ou et al., 2011; Morgan et al., 2016). A recent Australian study by Reilly and colleagues mapped the distribution of speech pathology services across metropolitan Melbourne and examined

the level of need in these areas according to language vulnerability and social disadvantage (Reilly et al., 2016). There were three times as many private speech pathology services (requiring the client to pay a fee) as there were public (free) services for 0–5 year-olds and overall, poorer availability of services in some of the most vulnerable areas. Evidence from the UK is less easy to come by but a recent study has suggested that such inequalities may not be as marked in London at least (Pring, 2016). All children have access to schools in the UK but not all of them have equal access to the necessary support and more socially advantaged parents are more likely to have the skills and knowledge based on their education and experience to be resourceful and access the services their children need.

The field of intervention research and evidence based practice has moved on apace since 1978. Indeed, Warnock, by her own admission, had little to say about it. Much has been written about the evaluation of interventions to promote child social and emotional development in general (Asmussen et al., 2016) and about interventions to promote the language skills of young socially disadvantaged children (Warr-Leeper, 2001). Most of the intervention studies concerning DLD have been carried out by specialist clinicians and could be described as "targetedindicated" interventions whereby children are identified by a diagnostic process prior to attending the service (Law et al., 2003). Rather less often they focus on universal (the whole population) or "targeted selective" interventions—i.e., where a subset of the population was deemed to be "at risk" and therefore received the intervention, usually for reasons of socio-economic disadvantage (Law et al., 2017a).

Interestingly although she did consider early identification, deeming it to be a health concern managed at a local level, Warnock did not consider the public health dimension. This has now moved into the mainstream in much of the UK as witnessed by the universal use of the Ages and Stages Questionnaire in Scotland and England (Squires and Bricker, 2009) and the recent announcement from the UK Education Minister Damien Hinds and the joint Public Health England and the Department of Education in England working together (https://www. change.org/p/rt-hon-damian-hinds-mp-secretary-of-state-foreducation-fair-funding-for-children-and-young-people-withspeech-language-and-communication-needs) and more recently still by Nadhim Zahawi Children and Families Minister who announced additional funding to help identify children with language difficulties at 2 years. https://www.gov.uk/government/ speeches/children-and-families-minister-announces-newearly-years-funding.

#### WARNOCK AND BERCOW 10 YEAR ON (BTYO) – WHERE HAVE WE GOT TO?

It is important to see Warnock within the current policy context. Specifically it is instructive to compare some of the Warnock recommendations with those in the most recent report on provision for children with speech language and communication needs namely the Bercow 10 years on report (ICAN/RCSLT, 2018). One would hope, given the passage of time, that recommendations would have moved on as some are achieved, others move out of focus and new ones come in. It is important, of course, to acknowledge that the terms of reference for the two reports were very different and so trying to speak across the generations is likely to be a challenge. Rather than making direct comparison between all the recommendations of both reports some, interesting similarities and differences can be identified. Understandably BTYO was much less concerned with the formal process of identification or the specific educational provision that is made although it authors do express concern about the perceived lack of funding without EHCPs. It was not trying to draw together what is known about services but rather point in the direction of future developments. Raising public and teacher awareness about speech and language disabilities particularly. As already indicated, public health was not mentioned in Warnock whereas it comes through very strongly in Bercow 10 years on. Similarly it references the Department of Education's role in contributing to the government's "social mobility strategy" tackling health inequalities: to their Joint Health & Wellbeing Strategy and in their contribution to Integrated Care Systems, such broad policy linkage was far beyond what was said in the Warnock report. The report highlights the role of evidence based practice and sharing best practice, both modern mantras which one could say were implicit but rarely explicit in Warnock. In relation to young people with communication disabilities the report says

The Department for Education should ensure that communication skills, specifically those identified as needed for the workplace, are appropriately recognised in the criteria for the Functional Skills qualifications. The Education and Skills Funding Agency should revise their apprenticeship funding rules for training providers and employers, to include training for communication skills development. (ICAN/RCSLT, 2018 paragraph 1.4 p.40)

These last two recommendations are interesting for two reasons. The first is that the disability issue is fused with employment more generally and the second is the employment significance of communication skills, to which Warnock does not refer at all. There is a recommendation for OFSTED, the mechanism in England by which school performance is monitored, which, of course, did not exist in the 1970s, to audit communication issues in the school and classroom. The Warnock report separates out psychiatric problems and what it prefers to call emotional and behavioral problems from speech and language disorders. An extensive body of research evidence over the last forty years suggests that these two domains are closely linked and Bercow 10 years on recommends that this be recognized in the provision of Children and Young People's Mental Health Services and the Mental Health Support Teams. An extension of this, demonstrating the ambition of the second report, is that there is a recommendation that the Youth Justice Board should introduce mandatory communication skills training for all justice professionals as part of their initial training.

BTYO focuses on the need for accessible and equitable services for all families something to which, as noted above, Warnock does not pay any attention. Prevalence especially from the Isle of Wight study (Rutter et al., 1976) is referenced in Warnock but there is no sense that specific subgroups of the population received greater or lesser access to the services they need. BTYO indicates that what are now called Local Offers need to include clear statements about who is responsible for funding and providing support for children with SLCN from 0–25 years. Furthermore, the report talks about the need to commission support for children and young people's SLCN on the basis of outcomes not outputs reflecting the need to get away from measurement of process (waiting lists, attendance etc) to whether the interventions made a difference. Early identification—a concern for Warnock—was also picked up in BTYO but the focus on current systems and how to improve them (notably the Ages and Stages Questionnaire) suggesting that the processes need developing within the context of the English Healthy Child Programme. Training is highlighted in BTYO but this time it is the health visitors (not considered in more than a passing manner by Warnock) who are considered central to the process of identifying special needs.

In short, the topological landscape has changed considerably in the 40 year since Warnock but many of the items, important now, were referenced in the earlier report. There are plenty of examples of real progress. In many ways the modern concerns are refinements which have schooling at their center but overlap with other services Child and Adolescent Mental Health (erstwhile child guidance) services and employment services with a strong public health dimension speaking to the nature of the populations identified and the service access available to them.

#### CONCLUSIONS

Returning to the key arguments in this paper, it is clear that the nature of disabilities changes as society changes and the society about which Warnock was writing was very different from our own. Yet definitions, labels and thresholds will always be an issue as different groups of professionals seek to define their populations for study, provision etc. It is clearly helpful, not least to parents and practitioners, that the views on what is a case coincides, but there is still a lot of progress that needs to be made in the science underpinning these judgements. "Need" sounds as if it is more meaningful as far as the child is concerned but, of course, this remains a relative concept. Does the parent's concept of need reflect that determined by the therapist or the authority commissioning the services. Communication has a number of characteristics which makes it relevant for those providing both health and educational services (in the UK context at least) and this has led to tensions as to who should take responsibility for these services. The argument here is that a public health approach in many ways mitigates this problem given the universal nature of educational provision. As demands change so it has become increasingly clear that pressure to develop services for children with SLCN has become better articulated over time so that those demands are better defined now than they were in 1978.

Warnock's recognition of the importance of the functional aspect of disabilities rather than their classification categories has meant that certain aspects of a child's development have become especially salient in measuring whether the system has succeeded in supporting the child. Many aspects of disability, physical access, sensory adjustment etc. have progressed substantively since the 1970s, because of increased awareness and new technology, but one aspect to which this paper has been devoted is communication access, the ability of the child to understand what is going on in the classroom and the home, with family and friends and to actively participate in discussions and decisions, in the curriculum and in making and sustaining friends.

Amongst its nuanced discussion and detailed analysis, the statement of educational need will always been seen as one of the key initiatives that came out of the Warnock report. Rather than engaging with some of these difficult concepts, people latched on to the statement as a way of identifying and ultimately helping the child. In fact, it ended up as an instrument in its own right with resultant tussles with parents about labeling on the one hand (bad) and access to funding on the other (good) or a more nuanced combination of the assessment of need (Resch et al., 2010; Watson et al., 2011). The good intentions to enshrine the process in law ended up with a rather litigious process with border disputes between health and education as to who was responsible (Lindsay et al., 2005) a tension that remains to this day (https://specialneedsjungle.com/call-to-action-letswork-together-stop-send-tribunal-nightmares/.

Nowhere was this more pronounced than language and communication skills which underpin many of the core activities that Warnock identified. Indeed, these skills are amongst the most important aspects of inclusion which go far beyond co-location and physical modifications to active engagement with peers and others. Warnock identified the importance of participation but did not discuss the issues in terms of specific abilities. Similarly she did not identify the liminal space between health and education where speech, language and communication needs have tended to reside in the UK, at least until relatively recently. Perhaps when her report is repeated fifty years on, it will be the better understanding of the role of such skills and the way that teachers respond to them which will be a focus. Warnock saw the influence of her report reaching "to the end of the century and possibly beyond" (p.325) and it has certainly done that. Expectations of parents have increased as have the numbers of staff and indeed the training for staff (Bercow, 2008). The argument here has been that the extent to which children's speech, language and communication needs are addressed will be critical to the practical implementation of many of the child focused recommendations in the Warnock report and this will remain the case for the foreseeable future, whatever new technology may bring.

#### AUTHOR CONTRIBUTIONS

The author confirms being the sole contributor of this work and has approved it for publication.

#### REFERENCES

DFE. (2014). Children and Families Act 2014. London: HMSO.

DfE/ONS. (2017). Special Education Needs in England January 2017. SFR 37/2017.

and Wales: Facilitating Communication Between Education and Health Services. London: DfEE/DoH.

experienced by parents of children with disabilities. Rehabil. Psychol. 55, 139–150. doi: 10.1037/a0019473

**Conflict of Interest Statement:** The author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Copyright © 2019 Law. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

# Forty Years After Warnock: Special Needs Education and the Inclusion Process in Denmark. Conceptual and Practical Challenges

Niels Egelund<sup>1</sup> \* and Camilla Brørup Dyssegaard<sup>2</sup>

*<sup>1</sup> Department of Education, Aarhus University, Aarhus, Denmark, <sup>2</sup> Independent Researcher, Holte, Denmark*

The 1978 Warnock report enshrined the policy of inclusion and changed the way we talk about disability starting in the UK and following became a worldwide trend especially after the Salamanca Statement in 1994. The report thus had a groundbreaking effect on how children with special educational needs should be educated. This article is a tribute to the Warnock report and takes the reader to Denmark to see how special education, inclusion, and differentiated instruction in comprehensive schools have been on the agenda in Denmark. Several schools and municipalities have tried to use resources on special education to promote inclusion and differentiation, but rules and regulations and clear incentives for exclusion have hindered this. Only after changing the concept of special education and the introduction of incentives for inclusion in Denmark, the trend has been radically changed. However, there are clear signs that teachers have not yet adapted to the idea of inclusion and are in need of specialist services and resources.

#### Edited by:

*Julie Elizabeth Dockrell, UCL Institute of Education, United Kingdom*

#### Reviewed by:

*Gregor Ross Maxwell, UiT The Arctic University of Norway, Norway Gottfried Biewer, University of Vienna, Austria*

\*Correspondence:

*Niels Egelund<EMAIL_ADDRESS>
#### Specialty section:

*This article was submitted to Special Educational Needs, a section of the journal Frontiers in Education*

Received: *17 January 2019* Accepted: *23 May 2019* Published: *06 June 2019*

#### Citation:

*Egelund N and Dyssegaard CB (2019) Forty Years After Warnock: Special Needs Education and the Inclusion Process in Denmark. Conceptual and Practical Challenges. Front. Educ. 4:54. doi: 10.3389/feduc.2019.00054* Keywords: differentiated instruction, incidence, inclusion, prevalence, school psychology, special education and special needs education

#### INTRODUCTION

The 1978 Warnock report led the way for the Education Act in 1981 in the UK. The report coined the concept of special educational needs. It substituted the concept of special education from the 1944 Education Act that had stipulated ten categories of individual "handicaps." The new concept moved the educational focus from the student's individual learning impairment or disability to the student's educational requirements. The report also built on an assumption that about two per cent of school-age children had severe learning disabilities or other difficulties that affected their education so much that a special school placement was necessary. The report thus had a groundbreaking effect on how children with special educational needs should be educated and in what settings.

In Denmark the Education Act from 1958 made the establishment of special education mandatory for municipalities. In 1993—a year before the 1994 Salamanca Declaration—a new Education Act was passed stating that instruction should be differentiated to suit the needs of all children in the comprehensive school, in order to minimize the need for special education. Moreover, in 2003, a change in the act encouraged the grouping of pupils within and across classes as a means of differentiation. The concept of inclusion was not adapted to the Danish language before 2005, when the ideas from the Salamanca Declaration led to the coining of a Danish word "rummelighed" meaning spaciousness even as the concept of special education and the medical model continued to rule.

In 2003 the Ministry of Education decided to make a quantitative and qualitative investigation of the use of special education as a supplement to regular education in Danish regular classes.

The quantitative study covered a random sample of 290 Danish public schools. The study showed that the prevalence of special education was 8.8% (SD 3.97) with a total variation from 0 to 26%. The qualitative study compared eight schools matched on demographic factors but with extreme levels (high or low) of prevalence. The study was reported in Danish (Egelund, 2003). In total there were surprisingly few relations between the prevalence of special education and factors often associated with the need for special education, such as resources for regular teaching, school size, municipality size, degree of urbanization, and geographical location.

A low prevalence of special education seemed to be related to other factors. First of all, the governing rules at that time encouraged a high prevalence of special education and the use of traditional special education as the only means of taking care of special needs. In fact, schools with low prevalence broke the rules omitting the requirement of a pedagogical and psychological evaluation of the student before using special education resources—with the consent of the local municipal authorities that owned the schools. The same schools also looked upon special needs as a natural product of human diversity and adapted the regular educational program to take these needs into account. This adaptability was closely related to the flexible organization of the school, also regarding the physical environment, where rooms for group work were available and where walls between classes could be removed, rendering teaching of both large and small groups possible. What was perhaps most important was the presence of teachers with teaching experience in special education and school psychologists as a key resource, providing collaborative consultancy, and supervision to teachers within the standard classroom setting. Finally, both pupils and parents had positive attitudes toward diversity and provisions for special needs within the regular educational program. If a specialized intervention was deemed necessary, it was looked upon as a welcomed effort, not as a stigmatizing, unavoidable solution (Egelund, 2003). Thus, the ideas from the Warnock report and the Salamanca Declaration had spread to the grass root level in some schools. Following the results, the Danish Minister of Education proposed that the term special education should be reserved for use in special schools and special classes. The intention, however, raised concerns that municipalities would gradually remove the 8–12% of the resources that had until now been set aside for special education in regular classes.

In 2007, Denmark went through a structural reform merging 275 municipalities into 98. An implication of the reform was that the ownership and responsibility for special schools were transferred from the counties to the municipalities resulting in an easier access to these schools for the individual municipalities. While the 2003 study showed a tendency in many schools to introduce more inclusive measures in their regular classes, some schools chose to establish special classes. This trend continued up to and after the structural reform in 2007, when new managements were set up and the degree of municipal supervision was low. From a level of 4.8% segregation to special schools and classes in 2005, the segregation rose to 5.4% in 2009 mainly due to an increase in use of special classes (Statistics Denmark, 2014). This prompted a study of the use of resources for special education (Deloitte, 2010) showing that in 2009, around 30% of all resources for schools in Denmark was used on special education with an almost equal division between segregated special education and special education in regular classes.

The above mentioned results had a great impact on the Danish politicians resulting in a new act in 2012 called "The Inclusion Act," stating that exclusion should be reduced to 4.0% in 2015. Moreover, the term special education was reserved for interventions with a weekly duration of 12 lessons (9 h) or more. Interventions of <12 lessons were now to be called "supplementary education and other academic support" and became the responsibility of the head teacher. An assessment and a statement from the Pedagogical Psychological Counseling Center were no longer needed.

To follow the development of more inclusive practices in regular schools the Ministry of Education engaged in several efforts. One was to establish a Resource Center for inclusion and special education (Ministry of Education, 2013). Another was to conduct a research project monitoring the process in the municipalities over the years 2013, 2014, and 2015. The results from this project are reported in this article.

#### THEORY

The guiding principle in special education in Denmark officially follows the 1994 Salamanca Statement: "The fundamental principle of the inclusive school is that all children should learn together, where ever possible, regardless of any difficulties or differences they may have. Inclusive schools must recognize and respond to the diverse needs of their students, accommodating both different styles and rates of learning and ensuring quality education to all through appropriate curricula, organizational arrangement, teaching strategies, resource use, and partnership with their communities. There should be a continuum of support and services to match the continuum of special needs encountered in every school" (Salamanca Declaration, 1994, p. 11–12).

A systematic review of international literature on inclusion performed for the Danish Ministry of Education in connection with The Inclusion Act showed that it is of vital importance for the academic and social development of students with special needs that the school has a stated objective to and positive attitudes toward inclusion. Teachers with negative attitudes toward inclusion of students with special needs, have negative effects on the development of all students (Dyssegaard et al., 2013). This follows Ainscow et al. (2006): "The development of inclusion, therefore, involves us in making explicit the values that underlie actions, practices and policies, and learning how to better relate our actions to inclusive values" (2006, p. 23). Furthermore, it follows Booth and Ainschow (2002) in their three dimensions of the Index for inclusion: (1) Production of inclusive policies. (2) Evolving inclusive practices. (3) Creating inclusive cultures.

The present research project looked at production of inclusive policies, evolving inclusive practices and the creation of inclusive cultures in Denmark from 2013 to 2015. The objective for the study was to describe the 12 municipalities' transition process following the new rules set out in "The Inclusion Act" from 2012. The main focus of the research project was to describe how the municipalities both pedagogically and administratively handled the transition toward a higher inclusion rate.

#### METHODS

The design of the research project was a panel study that was conducted three times in the years 2013, 2014, and 2015 in 12 municipalities representing demographic differences in Denmark. The research project was conducted according to principles in the "The Danish Code of Conduct for Research Integrity" which provides the research community with a framework to promote commonly agreed principles and standards. The Code of Conduct aims to support a common understanding and common culture of research integrity in Denmark (Ministry of Higher Education and Science, 2014). The design and approach to the research project was furthermore approved by the Danish Ministry of Education. Further approval by an Ethics Committee was not required as per applicable institutional and national guidelines and regulations. The 12 municipalities were invited to participate in the project. The 12 municipalities are completely anonymous. The completion of questionnaires was completely voluntary and also anonymous. In this way the informed consent of the participants was implied through survey completion. Participants in the interviews were invited by mail stating the purpose of the project and they were asked to give their consent in a reply mail. All participants were above the age of 23.