Written evidence submitted by Professor Jo Van Herwegen (Professor of Developmental Psychology and Education at UCL Institute of Education)
(SFC0010)
Response by Professor Jo Van Herwegen, Professor in Developmental Psychology and Education, Director of Child Development and Learning Difficulties Lab, IOE, UCL’s Faculty of Education and Society. Co-director for Centre of Educational Neuroscience, London.
My expertise lies in the science of learning and special educational needs. As such, the answers below focus on the educational support that neurodivergent CYP require and receive. However, where I am aware of evidence related to healthcare, I have included it.
In the evidence below, I will 1) outline the support systems that currently exist, 2) based on our research I will summarise four issues with the current support that students with SEND obtain, 3) highlight three Government actions to create a sustainable SEN system and restore confidence in the system.
Educational support for neurodivergent CYP is provided through a tiered support system:
For most neurodivergent students, Tier 1 and some Tier 2 support is sufficient; in fact, it is anticipated that around 80 percent of students will achieve the targeted goals through Tier 1 instruction. This can be provided within the school, especially when students are recorded on the SEN register, as they receive additional teaching and support alongside the standard curriculum and schedule. The SEN Register must be managed following guidance from the SEND Code of Practice but it is not a guarantee of specific provision for a child.
However, some neurodivergent CYP require additional specialist support (Tier 2 and Tier 3). To obtain this level of support, neurodivergent CYP require an Education Health and Care plan (EHCP) that details their needs and the support they require. The support outlined within a CYP’s EHCP is legally binding. In line with the SEND code of practice, a neurodivergent student should be assessed on an Education Health and Care needs assessment (EHCNA) before an EHCP can be written. This assessment can be requested by parents, schools or the CYP’s GPs, but according to the SEND code of practice, in all cases parents should provide information and views to inform the EHCNA and they must be consulted with by all professionals who provide the required evidence.
The role of parents and carers
The importance of the role of parents and carers in this process must not be underestimated and is acknowledged within the current SEND Code or Practice (2014). Parents and carers must have the opportunity to share their views, which include their hopes and aspirations for their child. They should have the right to receive impartial advice regarding the EHCP process: all local authorities must have a free and impartial information and advice service that parents and carers are informed about. Parents and carers should also be allowed to provide feedback on the draft EHCP. Finally, parent and carers must be given 15 days to provide views on a draft EHC plan and be asked to name a particular school or other institution to be named in the plan.
Once awarded an EHCP, parents and carers should be able to provide views regarding the reviewing, the reassessing, and the ceasing of an EHCP. An Annual Review meeting must be held, where parents, carers and key professionals are invited to contribute and express their opinions regarding the EHCP. A parent/carer can ask the local authority to get advice from anyone within education, health, or social care, providing it is a reasonable request. This might include an Occupational Therapist, or Speech and Language Therapist.
Policy concerns
Despite the best intentions of these policies, there are concerns still to be addressed. Firstly, the number of EHCPs issued has risen more than the overall need of SEND. The number of children and young people with EHCPs has increased to 517,000 (in January 2023) up by 9% from 2022 (Gov.uk, 2023). Due to austerity-driven cuts, more families are feeling the need for an EHCP to guarantee the support and provision for their child.
In addition, there are also a rising number of disputes regarding local authorities’ decision-making around EHCPs (Long & Danechi, 2022). Under the latest SEND legislation, if families disagree with a decision relating to their child’s SEND, they can appeal to The First Tier Tribunal for SEND. In the academic year 2022-2023, 13,658 appeals were lodged with SEND First Tier Tribunal, with 28% of these being for refusal to assess (Gov.uk, 2023). According to government data, of the appeals that reached a hearing, 98% were ruled in favour of the families. This certainly raises questions about local authorities’ practises and decision-making. The SEND Green Paper (2022) has called for mandatory mediation to reduce the number of cases reaching tribunal.
“I would say that in our daily lives, about 30% of our battle is dealing with the issues that surround our son with his additional needs, and the other 70% is probably battling against professionals who are either disinterested or lack knowledge entirely” (Parent of a child with Williams Syndrome)1.
The quote from this parent is not a one-off. In our research, we have surveyed and interviewed parents of neurodivergent CYP and have registered four issues regarding the current support provided for neurodivergent CYP, namely 1) a lack of teacher knowledge about how to help students with SEND requiring Tier 1 support; 2) inaccurate guidance provided during EHCP assessment requests processes; 3) an insufficient evidence base to inform Tier 2 and Tier 3 interventions; and 4) barriers to the implementation of targeted interventions in schools.
(A) A lack of teacher knowledge about how to help students with SEND requiring Tier 1 support:
Our research has shown that teachers endorse several incorrect beliefs about neurodivergent CYP (Gini et al., 2021; Van Herwegen et al., 2024a). This lack of knowledge prevents teachers effectively adapting their practice to ensure that neurodivergent students can benefit from teaching to the same extent as their peers, a requirement laid out in the National Curriculum Inclusion Statement (section C)6 and the Equality Act (section 4.2)7.
(B) Inaccurate guidance provided during EHCP assessment requests:
Our latest, yet-to-be published research, included a survey of 254 parents of neurodivergent CYPs. These parents were asked about their experience of requesting an EHCNA and the information they relied on when making an ECHNA request. There was large variation in the support accessed and the support available or provided. However, this survey showed that parents were often given incorrect information about requesting an EHCNA or about the type of support their child might be able to access.
One participant wrote that “staff are either not in place or don’t have the knowledge or understanding of the process” (Participants 145). Another wrote “The whole process was not very clear by the schools senco with teachers not having a clue on what to do” (Participant 67). Many spoke about misinformation (n= 21). Other literature has also highlighted the inconsistent knowledge of staff involved in SEND systems, with parents reporting that knowledge varied and had an impact on their overall experiences of the EHCP process (Cochrane, 2016; Skipp & Hopwood, 2016).
Our research has also shown that there is little understanding by medical and educational professionals about the neurodivergent populations they work with, but also when setting up support in EHCP. Indeed, parents expressed concerns about professionals’ awareness of the specific needs of children with neurodevelopmental conditions, as well as concerns regarding access to specialist support and the knowledge of specialists to support their children, with parents feeling they often were more knowledgeable than these specialists (Van Herwegen et al., 2019).
This lack of knowledge does not just extend to education or legislation issues but also the healthcare of neurodivergent CYP. For example, our research has shown that the vision problems of neurodivergent students are often overlooked in EHCPs (Harvey et al., 2020). Similarly, the lack of knowledge about autism by dentists means that many neurodivergent CYP will avoid going to the dentist, with serious health concerns as a result (McMillion et al., 2021).
The correct support provision for neurodivergent CYP relies on professionals, and if these gatekeepers offer inaccurate information about the legislation and the rights of parents/CYP, it can create substantial challenges for parents. The lengthy waiting lists further exacerbate these challenges, with some parents waiting for over a year to have their child assessed.
(C) An insufficient evidence base to inform Tier 2 and Tier 3 interventions:
Even when neurodivergent CYP are provided with an EHCNA and eventually an EHCP that outlines their needs and the required support, there are issues related to the evidence base of Tiers 2 and 3 interventions.
Our latest research revealed that a total of 467 studies across the globe and only 21 studies from the UK have evaluated what works for students with Special Educational Needs and Disabilities (which include neurodivergent students) from January 2000 to January 2023 (Van Herwegen et al., 2024b). This review involved a meta-analysis of all Tier 2 and Tier 3 targeted interventions that have been evaluated through randomised controlled trials or Quasi-experimental designs. It showed that whilst there were several interventions that could support students with reading and mathematical learning difficulties, there was a lack of evidence about educational interventions for particular neurodivergent groups, such as autism and Speech Language and Communication Needs (SLCN), two of the largest SEND groups in the UK. This indicates that there is a lack of understanding about what targeted interventions can improve educational outcomes for neurodivergent students, despite the evidence that educational outcomes for neurodivergent students are lowed compared to their peers (Tuckett et al., 2021).
(D) Barriers to the implementation of targeted interventions in schools:
A final barrier for the support for neurodivergent CYP to work well is the translation from research on neurodivergence into the classroom. Whilst there has been an increased focus on the use of evidence-based practices in both special and general education classrooms in many countries, what teachers understand to be evidence varies greatly. Some teachers use evidence from external published research, and others use word of mouth and recommendations by colleagues as evidence of what works (Antalek et al., 2024).
The lack of focus on research evidence often is related to a lack of access to that research or understanding of the research methodologies (Antalek et al., 2024). Most research is published behind paid walls; even when teachers have access to it, texts are often written in a way that is inaccessible to them. Studies often do not describe clearly how the research has been or should be implemented in classrooms and rarely describe what the active ingredients or theory of change of the interventions are (Van Herwegen et al., 2024b).
As there are many individual differences within groups of SEND and neurodivergence, teachers often adapt the implementation of the evidence-based interventions to suit the “spiky profiles” of their students or meet the individual needs of these students (Antalek et al., 2024). Although these adaptions allow for students to receive very personalised interventions, without detailed information about what the active ingredients of the intervention practices are and what key aspects should not be changed, teachers may adapt the intervention practices to such an extent that these practices may become ineffective over time.
Based on the existing evidence, there are two policy priorities for support for neurodivergent CYP in education and healthcare:
(A) Make training for staff working with all groups of neurodivergent and SEND students mandatory - The NHS Long-term Plan (section 3.32.)10 and the Health and Care Act (section 181)11 mandate autism and learning disability training for health care professionals and the National Autism Trainer Programme12, commissioned by NHS England, has now been running for nearly a year. The Health and Care Act and NHS Long-term Plan are all limited to the health and social care domains. However, there is no policy in place that mandates similar training for educators or those directly working with neurodivergent CYP such as teaching assistants.
As such, an evidence-based, formalised, and centralised approach to training delivery is needed for those working with neurodivergent CYP for more than one term.
This training should take the form of affordable online short courses, like this short course on Dyscalculia and mathematical learning difficulties (https://www.ucl.ac.uk/short-courses/search-courses/special-educational-needs-and-disability-send-developing-quality-inclusive-practice). This format decreases the cost and time demands associated with delivering the training relative to in-person delivery. Teachers and other related professionals would also then be able to complete the training at their convenience and receive a certificate upon completion. Certificates would be awarded conditional on users passing a quiz assessing the content covered and the courses would be endorsed by genetic condition advocacy groups. As a minimum, the main class teacher (if the child is in primary school) or the form tutor (if the child is in secondary school) and the SENCO should take the training.
(B) Developing a national database to track neurodivergent students’ response to interventions - Now, there are gaps in research about what targeted interventions help to raise educational outcomes for neurodivergent students. Our research (Antalek et al., 2024) has shown that teachers do track responses to intervention for their students. Yet, this data is often stored locally, and the assessments may not always be reliable. However, together with researchers, teachers could agree on the best measures to be used to track responses to intervention (see Outhwaite et al. 2024).
One solution would be for this data to be stored in a national database that would contain information about the student, the type of the practice or intervention implemented and the baseline and post-intervention or even follow-up data. Such a database would not only allow for larger sample sizes but would also address the issue that there is a gap between what is being evaluated by researchers and the approaches and interventions that are being used in the schools (Van Herwegen et al., 2024b).
(C) Develop a trusted source with resources about SEND for educators. Teachers are very eager to use research-informed practice to increase the educational outcomes for all students, including students with SEND. Whilst the Education Endowment Foundation is a trusted source that provides clear evidence on what educational practices are evidence-based, there currently is no centralised trusted source that provides teachers with evidence about what works for students with SEND. For example, there are some specific databases that provide overviews of what works for specific groups of students or outcomes (e.g. https://speechandlanguage.org.uk/educators-and-professionals/what-works-database/ or https://interventionsforliteracy.org.uk/home/interventions/list-view/), teachers are not necessarily aware of these. The Whole School Send website brings together various toolkits and websites https://www.wholeschoolsend.org.uk/page/what-works but it is not clear how and what rigour was used to evaluate what has been included and what has not been included and none of the teachers we interviewed showed awareness of this website (Antalek et al., 2024). As such, there currently is no resource for educators that summarizes and presents findings through tools such as the EEF Teaching and Learning Toolkit for students with SEND. We have tried to address this through the MetaSENse database: https://www.educationalneuroscience.org.uk/metasense/.
There is growing evidence of a lack of understanding about neurodivergent children and young people (CYP) and how they can be supported through existing legislation. Education providers and healthcare staff require additional training on neurodivergence (which includes autism, other learning difficulties, and genetic conditions), and training on the actual legislation, as there are numerous barriers that prevent the current laws from being fully implemented for maximum benefit.
References:
Antalek, C., Thomas, S.C., Masterman, T., Dockrell, J., Gordon, R., Marshall,, C. & Van Herwegen, J. (2024). Raising Educational Achievement for Students with Special Educational Needs: Perspectives on Evidence-Based Interventions from Educational Practitioners. https://osf.io/preprints/osf/yufpw
Gini, S., Knowland, V., Thomas, M.S.C. & Van Herwegen, J. (2021). Neuromyths about neurodevelopmental disorders: Misconceptions by educators and the public. Mind, Brain & Education, 15(4), 289-298.
Harvey, H., Palikara, O., Ashworth, A. & Van Herwegen, J. (2020). The underreporting of vision problems in statutory documents of children with Williams syndrome and Down syndrome. Journal of Autism and Developmental Disabilities 50, 4553–4556
McMillion, A, Van Herwegen, J, Johnson, A, Monteiro, J, Cronin, AJ, & Remington, A. (2021). Dental Experiences of a group of Autistic Adults based in the United Kingdom. Special Care Dentist. 1– 15. https://doi.org/10.1111/scd.12583
Outhwaite, L. A., Aunio, P., Leung, J. K. Y., & Van Herwegen, J. (2024, March 9). Measuring Mathematical Skills in Early Childhood: A Systematic Review of the Psychometric Properties of Early Maths Assessments and Screeners. https://doi.org/10.31234/osf.io/hk37b
Van Herwegen, J., Ashworth, A., & Palikara, O. (2019). Views of professionals about the educational needs of children with neurodevelopmental disorders. Research in Developmental Disability, 91, 103422. doi: 10.1016/j.ridd.2019.05.001.
Van Herwegen, J., Ashworth, A., & Palikara, O. (2018). Parental views on special educational needs provision: cross-syndrome comparisons in Williams Syndrome, Down Syndrome, and Autism Spectrum Disorders. Research in Developmental Disability, 80, 102-111.
Van Herwegen, J., Outhwaite, & L.A.,Herbert, L. (2024a). Neuromyths about dyscalculia and dyslexia amongst educators in the UK. British Journal of Special Education. 1-10, DOI: 10.1111/1467-8578.12516
Van Herwegen, J., Masterman, T., Dockrell, J., Gordon, R., Marshall,, C. & Thomas, M.S.C. (2024b). Raising educational outcomes for students with special educational needs and disabilities: A systematic review and meta-analysis. https://doi.org/10.31234/osf.io/bsk9a
November 2024