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Capturing the Voices of Children in the Education Health and Care Plans: Are We There Yet?

Original Research published: 19 April 2018 doi: 10.3389/feduc.2018.00024

Capturing the Voices of Children in the Education Health and Care Plans: Are We There Yet?

Olympia Palikara*, Susana Castro, Carolina Gaona and Vasiliki Eirinaki

School of Education, University of Roehampton, London, United Kingdom

The need for a focus on the voice of children with special educational needs and disabilities (SEND) has received increased recognition internationally both in policy and research. In England, this was emphasized in the new special educational needs framework introduced in 2014. As part of this new policy, children with disabilities and/or additional needs can receive an Education Health and Care (EHC) plan. The EHC plan is a single document that should describe the children’s strengths and needs in a multi- disciplinary and holistic way. Section A of the EHC plan must include the child’s own perspective. In this context there is much need for evidence on the quality of these new plans and in particular on the quality of the depictions of children’s voices. The aim of this study was to address this knowledge gap by analyzing the depictions of children’s voices and the process by which these were gathered in 184 EHC plans of children with SEND attending mainstream and special schools in the Greater London area. The content analysis of the section concerning the children’s voices was conducted using the categories of a multi-dimensional classification system, which includes aspects relating to the child herself, but also to her environment and relationships—the International Classification of Functioning, Disability and Health (ICF). The findings revealed high levels of variability in the way the voices of children were captured, including the methods used to ascertain their views. Additionally, the type of school that the child was attending seemed to play a significant role on how his/her voice was captured, favoring mainstream schools. The findings of the present study provide the first set of evidence-based data concerning the quality of the content of the newly introduced EHC plans and are discussed in light of the implications they have for policy, practice and further research in the area.

Edited by: James Martin Boyle, University of Strathclyde,

United Kingdom Reviewed by: Sue Pearson, University of Leeds, United Kingdom Jean Ware, Bangor University, United Kingdom *Correspondence: Olympia Palikara olympia.palikara@roehampton.ac.uk Specialty section: This article was submitted to Special Educational Needs, Keywords: special educational needs (SEND) code of practice, voices, children, international classification of functioning, disability and health (ICF), education, health and care (EHC) plans a section of the journal Frontiers in Education Received: 18 November 2017 Accepted: 03 April 2018 Published: 19 April 2018

Introduction

Citation: Palikara O, Castro S, Gaona C and Eirinaki V (2018) Capturing the Voices

Capturing the voices of children with special educational needs and disabilities (SEND) has increasingly been recognized as a key element of relevant policy initiatives internationally (United Nations, 2006; Porter, 2014). In England, there is increased emphasis on participation of children and young people in the decision-making process through the new SEND Code of Practice, which was introduced following the enactment of the Children and Families Act (CFA) 2014 (Department for Education and Department of Health, 2015). These reforms have been described as the most

of Children in the Education Health and Care Plans: Are We There Yet?

Front. Educ. 3:24. doi: 10.3389/feduc.2018.00024

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substantial ones in the UK over the last two decades (Department for Education, 2014; Norwich and Eaton, 2015; Curran et al., 2017). The CFA introduced the Education, Health and Care plans (EHC plans) to replace previous statements of Special Educational Needs. The EHC plan is a single document that should describe the children’s strengths and needs, in a multi- disciplinary and holistic way and portraying the child’s own perspective. Although capturing the views of children is a key element of the new SEND policy, there is limited systematic evidence to date on how the voices of the children are depicted in the EHC plans and on the methods used to ascertain their voices. To the authors’ knowledge, this is the first study which aims to address this gap by systematically analyzing the EHC plans of children attending mainstream and special schools in order to examine how their voices are being captured.

The New Special Educational Needs Framework in England Some of the changes introduced by the new SEND framework concerned the definition of SEND; the emphasis on multi-agency team work in achieving an integrated, holistic assessment of the child or young person; the extension of the age range for the provision of SEND from birth to 25 years of age; and the child- centered approach, in which eliciting the voices of the children and young people themselves was considered a key element of their assessment and intervention. Additionally, as part of this SEND policy framework, Education Health and Care (EHC) plans replaced the Statements of SEN.

The process or methods for eliciting the views of children and young people do not come without particular challenges. Previous research has highlighted that capturing the voices of children and young people is not unproblematic and requires use of appropriate methodology, meticulous planning and care in eliciting and interpreting valid responses (Whitehurst, 2007; Palikara et al., 2009). Whitehurst (2007) argued that this is particularly challenging when capturing the views of children with profound and complex needs and called for the need to develop appropriate methodologies and strategies to meaningfully engage in such processes with the children themselves. Palikara et al. (2009) examined the views of adolescents with a history of Specific Language Impairment during the transition from secondary education to post-16 and argued that the young people were aware of their history of SEND and were able to offer valid accounts of the effect that these difficulties had on different aspects of their lives including education. The findings of this study also highlighted important methodological issues in eliciting the views of children with SEND including the value of professional experience and the use of “narrative coherence” (Hauser et al., 2006), which concerns the integration of personal experience and circumstances in a meaningful story, as a useful methodological tool in ascertaining the views of these children. Although the above studies provided some valuable evidence concerning the challenges and the opportunities related to eliciting the views of children with SEND, it should be noted that none of them has examined ways by which the voices of these children are actually being depicted in official legal documents, such as their Statements

The Voices of Children With SEND The notion that the voices of children and young people with SEND should be heard and that they should be actively involved in decision making about their education, health and social care is not a new one and has been described and pointed out before in policy and legislation documents both in the UK and internationally (Children Act, 1989; Gray et al., 2006; United Nations, 2006; Palikara et al., 2009). Policy changes have taken place with the voice of the child in the center (Children Act, 1989; Individuals with Disabilities Education Act, 2004), but there still appears to be a gap between policy and practice (Porter, 2014). Although the values and ideologies of these policy documents are important, the empirical evidence

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of SEN, or EHC plans, which usually accompany the children and young people throughout their whole educational path and play a significant role in determining outcomes, aspirations expectations and provision among other things.

In order to address some of the gaps identified in the literature above, we gathered some novel data by investigating the quality of the newly introduced EHC plans specifically regarding the nature of the content included in section A—the voice of the child. In particular, we aimed to address the following four research questions:

1. Have the children’s voices as presented in the section A of the EHC plans been obtained directly from the child? 2. What methods were used in order to elicit the views of the children on the EHC plan? 3. In section A of children’s EHC plans was the focus on abilities, disabilities or both? 4. Were there any differences in the depictions of children’s voices in EHC plans from mainstream schools when compared to those from special schools?

Participants The EHC plans included in the analysis describe the education health and care needs of 52 girls and 132 boys in 92 mainstream and 92 special schools, across 9 London LAs. 184 EHC plans were analyzed from a larger dataset of EHC plans that have been received by the research team. These 184 plans were selected on the basis that they were the ones fully completed at the time of data analysis, and included a final version of all sections of the EHC plan. The date of birth was made available for 175 of the 184 children; mean age was 11.21 years, with a standard deviation of 4.04; the youngest participant was 3 years old and the oldest participant 21 years old.

Data Analysis The content of section A of the plans included in this study was analyzed through a process of systematic content analysis. Two types of content analysis were included sequentially. First, an inductive process of content analysis was adopted to ascertain whether general themes would emerge from the reading of section A of the plans. As a result of this analysis, it was noted that this section contained information on abilities/strengths of the child and on disabilities/functioning issues of the child; similarly,

Materials And Methods

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some plans use the first person (“I”) while others refer to the child using the third person. However, in many of the plans using the first person, there were indications of the fact that maybe the child herself did not provide the information conveyed, as it was often characterized by a rather complex discourse in cases where children were reported not to have the functional abilities to express their view in such complex way. Therefore, as a first step and as a result of an inductive content analysis, frequencies were run for all plans regarding the following categories: number of plans that use the first person in section A; number of plans that report the process by which the voice/perspective of the child was obtained; number of plans with section A focusing on abilities, disabilities or both.

Table 1 | Frequency of plans per local authority.

Local authority Number of EHC plans obtained

Total 184

in the section A, the focus on abilities or disabilities and also regarding the content of the plans as coded by the ICF-CY system. These analyses were performed using non-parametric tests with R studio.

Results

The LAs included in the inferential analysis differ substantially in terms of their demographics. According to the 2015 Indices of Deprivation, LAs 2 and 4 are within the 10% least deprived in the country, while LAs 3 and 1 are in the 50% more deprived. More details about the socio-economic characteristics of these boroughs cannot be included for preservation of confidently and anonymity.

We also tested whether there were differences between LAs and types of school in regard to: the use of the first person

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Table 2 | Most common ICF-CY codes used to describe abilities/strengths.

ICF-CY code Occurrences Records

Motivation functions 191 141

Temperament and personality functions 81 58

Interactions with peers 39 38

Communicating with gestures 24 20

Speaking 20 19

Eating 18 18

Calculating 14 14

Non-definable 13 9

Figure 1 | Frequency of strengths/abilities in section A of the plans, matched with the ICF-CY classification system.

56, who is described in the needs section of his plan as “not engaging without support” and just “beginning to understand routines and expectations in school at 6 years of age”). Therefore, it is difficult to ascertain whether the use of the first person in the great majority of the plans actually represents the real number of children there were indeed heard. Only 31 plans of the 184 (16.8%) report the methods by which the voice of the child was obtained. Often, there is mention to the fact that the parent filled in the section of the plan in representation of the child, but there is no indication in the great majority of these plans on how the child’s views are understood by the parent or other representing adults. When looking at whether the plans focus on abilities, disabilities or both in section A, it was observed that the great majority of plans focus on both (91.3%); For example, participant 197 “turns the pages by himself” but “doesn’t like others being in his personal space and can become upset when this happens.”

Figure 2 | Frequency of functioning issues in section A of the plans, matched with the ICF-CY classification system.

specific system such as the ICF (for example, participant 33 was described as having said that she needs help with “gross motor skills” in section A). Table 2 discriminates the specific aspects of functioning that were most commonly mentioned as abilities/strengths of the child: motivation functions appear 191 times (occurrences) in 141 plans (records). It is very common that the child or representative describes what the child enjoys doing. These were all classified as motivational aspects. The second most common aspect identified as abilities of the children was temperament and personality functions (children being described as “loving,” “sociable,” etc.; these appeared 81 times in 58 plans Other aspects identified as abilities were observed in a minority of plans, including interactions with peers, communicating through gestures, speaking, eating and calculating.

Figure 2 shows the frequency of plans and the total number of occurrences of each meaning unit, within the ones classified as disabilities/functioning issues of the child. Once again, Activities and Participation are the most common type of functioning issue observed, followed by Body Functions. There are only 8 occurrences corresponding to 8 records of Body Structures identified as functioning issues; 55 occurrences in 45 records were non-definable.

Figure 1 shows the frequency of plans and the total number of occurrences of each meaning unit, within the ones classified as abilities/strengths of the child. The figure shows that most abilities identified in section A of the EHC plans refer to Activities and Participation aspects, followed by Body Functions; some aspects were classified as non-definable for being rather vague and consequently not susceptible of being classified with a

Table 3 shows the specific type of content assigned to functioning issues. The most common functioning issue observed was emotional functions (often linked to emotional regulation issues, such as aggressive outbursts or tantrum

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variables under analyses. In fact, the Kruskall-Wallis test (H) “is approximately chi-square distributed, meaning that the probability of getting a particular value of H by chance, if the null hypothesis is true, is the P value corresponding to a chi-square equal to H” (McDonald, 2014, p. 157). No differences were found between LAs or type of school in this respect.

Table 3 | Most common ICF-CY codes used to describe functioning issues.

ICF-CY code Occurrences Records

Emotional functions 82 62

Speaking 60 59

Non-definable 55 45

Similar analysis was run to test the difference between LAs and type of school in relation to the use of the first person in section A of the plans, the quality of the report on how the voice of the child was obtained and regarding a stronger focus on abilities, disabilities or both. It was found that LA 1 uses the first person significantly less than LA 2 and 4 [H (8) = 39.41, p ≤0.05]. Local authority 3 describes the method for obtaining the child’s voice significantly more than the other LAs [H (8) = 72.31, p ≤0.05]. Mainstream schools report the method for obtaining the voice of the child significantly more often than special schools (U = 11.81, p ≤0.001).

Accepting novelty 38 32

Eating 37 35

Dressing/undressing 34 34

Regulation of emotions 31 25

Toileting 31 31

Sensory functions 29 28

Writing 27 27

Directing attention 26 26

Reading 24 24

Discussion

To our knowledge, this is the first study which aimed to provide systematic evidence concerning the quality of the newly introduced EHC plans, in relation to how the voices of children with SEND attending mainstream or special schools were captured. The content of 184 EHC plans of children with SEND attending mainstream and special schools in the Greater London area were analyzed using the ICF as theoretical and analytical framework. The findings of the study showed great variability between LAs in the way that they were capturing the voices of the children and also in the methods employed to ascertain their views. Although most of the EHC plans included some information on children’s abilities/strengths, the analysis of these units showed that they were rather limited in scope and revealed little about what the child was good at. Significant differences were found in the way the voices of the child were captured depending on the type of school attended, with mainstream schools providing more detail.

Figure 3 | Frequency of environmental factors in section A of the plans, matched with the ICF-CY classification system.

behaviors). Speaking is the second most common functioning issue. Non-definable issues due to their vagueness and lack of clarity were the third most commonly identified.

Variability of EHC Plans The results of the study highlight the high level of variability observed in the way different LAs were capturing the children’s voices. The data collected in this study was gathered between 2015 and the end of 2016 and therefore cannot represent the current national trend; this is still to be known upon completion of conversions of statements into EHC plans. However, the present study includes a variety of EHC plans, developed within LAs that differ substantially regarding their ways of operating and availability of resources. As mentioned in the sample description, the areas included in the main analysis differ in terms of their deprivation indices. This is interesting if we consider the observation that some of the quality aspects of the plan (section A) differed significantly between LAs; these differences might reflect different procedures in designing and implementing the EHC planning process, but also the resources (and often the lack of them) available to support these procedures.

Results of the Inferential Analysis Series of non-parametric tests (Mann-Whitney and Kruskal- Wallis) were run to test differences between LAs and type of school regarding the inclusion of specific abilities, disabilities and environmental issues in section A of the EHC plans. Non- parametric tests were used given the categorical nature of the

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mentioned as abilities/strengths of the child. This happens as in most cases there is a description of the child’s general behavior (using terms such as “loving,” “caring,” “sociable” or “cute”), more than actual behavioral dimensions that can be prompted and measured as the basis for educational interventions and monitoring.

Regarding the specific types of disabilities identified in the analyzed plans, it is worth noting that the code non-definable was the third most frequent code linked to these meaning units. The reason for this was the rather vague nature of many of these statements. For example, “has issues around language development” or “needs to be more independent” are rather general statements that do not support potential interventions and do not illustrate the highly specialized work of a multi- disciplinary team of experts that should have developed the plan bringing together their expertise. On the contrary, these are general, not specialized statements that could apply to many children with or without education, health and care needs. Non-definable statements identified in this study also refer to diagnostic data which is often presented as a way of describing a general need, but not necessarily informing educational intervention, or actions to take place in an educational setting (for example, “has epilepsy,” but no information is available on the frequency and severity of seizures and functional consequences for the child’s participation).The issues of quality observed in these plans suggest that there might be other factors influencing the quality levels of the EHC plans developed and these might be the training and specialization characteristics of those involved in EHC plan development. To date there are no national guidelines, standardized procedures or minimum requirements to be met by those who are involved in the process. The data observed in this study might be a reflection of such dearth of specialization.

The Use of ICF As Theoretical and Analytical Framework In the present study, the use of the ICF was a valuable theoretical and analytical framework to enable the identification of quality issues with a greater level of specificity, looking at the actual nature of the content included in the plans. The biopsychosocial nature of this classification system split into Body Functions and Structures, Activities and Participation and Environmental Factors seems to be a good fit when trying to analyse the quality of documents that aim to be holistic in their descriptions of education, health and care aspects. This suggests that perhaps the use of such system as a supporting tool in the developing stage of the EHC plans could potentially help to improve their quality—by reducing vague statements, introducing standard levels of information of social and individual nature as well as by providing a common language between professionals from different areas of intervention. The ICF is of particular relevance for the English context as it has the potential to address key issues in the current SEND policy including: ensuring parent and child access rights to an adequate, relevant and user-friendly assessment; adopting an interactive causal model and holistic model of disability, which is relevant to a range of areas of

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children are being captured, because of the difficulties inherent with eliciting the views of these children (Whitehurst, 2007). Furthermore, research aimed at examining the quality of how the voices of older young people with SEND are being captured, especially in preparation for adulthood is a noteworthy area for future research with important educational and clinical implications.

functioning; covering personal strengths, not just difficulties; and supporting inter-professional collaboration (Castro and Palikara, 2016; Norwich, 2016).

Conclusion

Author Contributions

OP and SC: Have conceptualized and written the whole paper in collaboration, and the ideas provided are the result of shared reflection; CG and VE: Contributed to conducting the study and drafting and revisiting the intellectual content of the paper.

Funding

This project was funded by a British Academy/Leverhulme Small Research Grant (grant number SG142214).

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