Written evidence submitted by Dr Angeliki Kallitsoglou

Background:

Our earlier research on the impact of COVID-19 pandemic school and childcare closures on maternal wellbeing showed that mothers with children with SEN experienced unique mental wellbeing and practical challenges by lack of access to caregiving support and education for their children (Kallitsoglou & Topalli, 2024; Morgul, Kallitsoglou, Essau, 2024). Lack of access to adequate early childhood education and care has critical implications for both the child and the mother:

-          Children may be deprived of crucial early intervention

-          Increased risk of poor maternal mental wellbeing as caregiving strain could rise in the absence of support (e.g., Babinsky et al., 2020; Masefield et al., 2020).

-          Increased risk of limited employment opportunities among mothers with caregiving responsibilities of a child with SEND (e.g., Scott, 2018)

Despite the importance of accessible support for children with SEND and their families, challenges persist in the local community's ability to meet this need. In 2022, the Early Years Alliance report ‘Too  little, too late: SEND funding and the early years’ reported that approximately one in four (28%) early years providers in the UK struggle to accommodate children with SEND (Early Years Alliance, 2022). Our understanding of the difficulties families with young children with SEND experience in accessing ECH education and care is still limited, despite significant research advances on SEND and early childhood (ECH) education and care. Community initiatives are recognised as “incredible innovators” in the field of early childhood intervention, but rarely do we tap on them to inform practice (Allen, 2011).

Therefore, our team including Dr Rebecca Georgis, School of Education, University of Exeter, UK and nursery manager Cristina Motoca partnered with professionals and mothers with children with identified or emerging additional needs to identify key issues in accessing inner-city community daycare for children with SEND, and sustainable caregiving solutions in resource-challenged community day care.

Below, I am sharing preliminary findings from our ongoing consultations with parents and professionals in relation to:

Terms of Reference I: Support for children and young people with SEND

• Defining what inclusivity in mainstream schools and early years settings should mean and look like in practice

Consultations with mothers suggest that inclusivity involves fostering a welcoming approach where parents feel that the child can be accepted with an open, nonjudgmental attitude about the child, the parent and their parenting.

When nurseries turn away children without offering a clear explanation or justification it can be perceived as rejection, lack of interest or willingness to help. This approach can leave mothers feel unwanted, helpless and unsure about what to do which can trigger additional challenges for them and their children. We found that when the setting’s response could be rationalised or justified by the parent, there was less scepticism over the setting’s intentions to help.

The consultations suggest that in an inclusive setting parents feel that they are listened to and are offered solutions and support.

Recommendation: Inclusive daycare settings should adopt an empathetic and transparent communication policy during the admissions process. This includes providing clear, specific explanations for their decision and, where possible, offering alternative solutions or signposting families to other resources and services. Early years professionals should receive training on how to foster a welcoming  and nonjudgmental environment where parents feel heard, valued, and supported, even in situations where their child's needs cannot be met.

• Outcomes for children and young people with SEND and how these can be improved

Communication skills: Improvements in both verbal and non-verbal communication skills ranging from expressing food preferences to following simple rules had a huge impact on the child’s quality of life at the setting and at home. Some of the benefits of improved communication include improved relationships with siblings and peers, increased parental and professional’s ability to understand and respond to the child’s needs and enhanced opportunities for learning. It also had an important impact on maternal wellbeing as mothers felt more confident supporting the child’s needs.

Recommendation: prioritise the development of communication skills.

Well rested children – the importance of sleep: Sleep is important for child growth, memory consolidation and behaviour regulation (Schlieber & Han, 2021). Poor sleep is related to poor outcomes, for instance toddlers and preschoolers who sleep poorly may find more difficult to regulate their behaviour (Bélanger et al., 2015). Children with autism spectrum disorder (ASD) are often reported as poor sleepers (Mannion & Leader, 2014).As well as child outcomes sleep affects not only the child, but the entire family. The consultations indicated that poor sleep was an issue for children with ASD increasing parenting stress. Inadequate sleep was particularly challenging for parents, especially those with other children to care for, shift-working mothers, and lone mothers who lacked support to rest and recuperate.

Mothers reported noticeable improvements in their children’s sleep once they started attending nursery. This change inadvertently benefitted the mothers, allowing them to rest better and be more present at home to meet their family's needs.

Professionals shared that children who access inner-city community daycare may live in tower blocks. The nursery can offer children the space to run freely, let off steam and enjoy themselves. Furthermore, previous research has shown that physical activity in children with ASD is linked to improved sleep (Tse et al., 2022). Additionally, sleep and rest times offer opportunities to reduce arousal levels, supporting self-regulation and overall well-being (Gehret et al., 2019). It is plausible that being outdoors and active help children with ASD sleep better. Additionally, nursery attendance may help these children may learn to recognise and manage their tiredness and stress cues and communicate these effectively.

Recommendation: Daycare settings to provide space for children to expend energy and learning opportunities to recognise and manage tiredness and stress cues which could lead to better sleep. Offering parents practical guidance and support on bedtime routines and managing sleep challenges at home.

Signposting to community-based support: In sharing their journey of identifying the right support and daycare, mothers shared experiences of being signposted to relevant community services by different professionals. The collective experience of mothers suggests the signposting process is often ad hoc and not part of a well-organised system with clear pathways to support. Additionally, not all parents have the capacity to benefit from signposting. Self-referral within signposting processes, require parents to manage a great deal of information and take the initiative. However, parents of children with SEND, especially single parents, face significant challenges managing their daily lives and their child’s needs while trying to identify a suitable daycare setting. As a result, the signposting process can often add considerable stress and anxiety. For signposting to be effective, it must be thoughtfully planned and implemented (Burns et al., 2021).

Recommendation:

-          Organised signposting system with clear pathways to community-based support for families of children with SEND.

-          Professional personalised support to guide parents through available services and minimise the need for self-referral and associated burden on families.

-          Follow-up and support through dedicated family liaison officers or key workers to ensure efficient and accessible signposting particularly for parents facing significant challenges.

Successful transitions: Consultations with mothers indicated that the prospect of transitioning from early years to primary school can be a source of distress. This is in line with existing literature on transitions for children with SEND including systematic reviews on the successful transitions for children with ASD (Fontil et al., 2020).

Mothers were unsure about where to start from looking for schools, whether they could find a school that could support their child’s need and how the support was going to look like in the host school. Therefore, some parents may require additional support to navigate this process.

The consultations indicated that the child’s sex could influence transitions and associated support for children with ASD. One parent shared how the experience of supporting her daughter’s transition was significantly different from the experience supporting her son as her daughter could conduct herself in way that was perceived less challenging or intimidating by teachers. In turn, this leads to a smoother transition to primary school and better outcomes. We could not fully understand the reasons of the difference in the context of our research. Camouflaging refers to the use of strategies and behaviours to mask autistic differences. A relatively recent meta-analysis found that autistic individuals of female sex or identifying as girls camouflage more than those reporting male sex or identifying as boys (Cook et al., 2021). Camouflaging could be a plausible explanation of sex differences in accessing ECH education and care for children with SEND.

While daycare plays a critical role in facilitating the transition process, it is equally important for the primary host school to have adequate support systems in place to ensure a smooth transition. Effective exchange of information between daycare and primary school is crucial. Moreover, communication among all stakeholders—beyond just the home, school, and nursery—could include other professionals involved in the child’s support. Early years settings could also focus on preparing children for primary school by helping them develop skills that can enhance their readiness for this next stage of education.

Recommendations: Offer support to families to navigate the transition process and coordinate activities between the nursery and the host school with input by the group of professionals involved in the child’s support. Consider sex differences in decision making. Focus on developing skills essential for primary school readiness.

• What alternatives are there to the EHC Plan process?

While not everyone may require an EHCP, families and their children still need help. Additionally, the EHCP offers some continuity and reassurance for parents especially during transitions. Arguably, we have the graduated approach, but there are challenges with its implementation. There are also questions about how it can support transitions effectively. Discussions with senior leaders suggest the system feels like an all-or-nothing approach, with no middle ground highlighting the need for something in between the current options.

Recommendations: Consider the introduction of a documented intermediary support system that will precede the ECHP and the development of a transition framework and associated pathway with clearly defined roles and responsibilities for stakeholders involved in the implementation process.

January 2025

References:

Allen, G. (2011). Early intervention: the next steps, an independent report to Her Majesty's government by Graham Allen MP. The Stationery Office.

Babinski, D. E., Mazzant, J. R., Merrill, B. M., Waschbusch, D. A., Sibley, M. H., Gnagy, E. M., ... & Pelham Jr, W. E. (2020). Lifetime caregiver strain among mothers of adolescents and young adults with attention-deficit/hyperactivity disorder. Journal of family psychology, 34(3), 342.  https://doi.org/10.1037/fam0000609

Bélanger, M. È., Bernier, A., Simard, V., Desrosiers, K., & Carrier, J. (2015). Sleeping Toward Behavioral Regulation: Relations Between Sleep and Externalizing Symptoms in Toddlers and Preschoolers. Journal of Clinical Child & Adolescent Psychology, 47(3), 366–373. https://doi.org/10.1080/15374416.2015.1079782

Burns J, Conway DI, Gnich W, Macpherson LMD. A systematic review of interventions to link families with preschool children from healthcare services to community-based support. J Public Health (Oxf). 2021 Jun 7;43(2):e224-e235.  10.1093/pubmed/fdaa242

Cook, J., Hull, L., Crane, L., & Mandy, W. (2021). Camouflaging in autism: A systematic review. Clinical psychology review, 89, 102080. https://doi.org/10.1016/j.cpr.2021.102080

Early Years Alliance, (2022). Too little, too late SEND funding and the early years sector. Too Little, Too Late report Feb 2022

Fontil, L., Gittens, J., Beaudoin, E. et al. Barriers to and Facilitators of Successful Early School Transitions for Children with Autism Spectrum Disorders and Other Developmental Disabilities: A Systematic Review. J Autism Dev Disord 50, 1866–1881 (2020). https://doi.org/10.1007/s10803-019-03938-w

Gehret, H., Cooke, E., Staton, S., Irvine, S., & Thorpe, K. (2019). Three things I learn at sleep-time: children’s accounts of sleep and rest in their early childhood education programs. Early Years, 41(5), 556–573. https://doi.org/10.1080/09575146.2019.1634010

Kallitsoglou, A., & Topalli, P. Z. (2024). Home-schooling and caring for children during the COVID-19 lockdown in the UK: emotional states, systems of support and coping strategies in working mothers. Frontiers in Sociology, 9, 1168465. 10.3389/fsoc.2024.1168465

Mannion, A., Leader, G. (2014) Sleep Problems in Autism Spectrum Disorder: A Literature Review. Rev J Autism Dev Disord 1, 101–109. https://doi.org/10.1007/s40489-013-0009-y

Masefield, S. C., Prady, S. L., Sheldon, T. A., Small, N., Jarvis, S., & Pickett, K. E. (2020). The caregiver health effects of caring for young children with developmental disabilities: a meta-analysis. Maternal and child health journal, 24, 561-574. https://doi.org/10.1007/s10995-020-02896-5

Morgül, E., Kallitsoglou, A., & Essau, C. (2024). Experiences of mothers of children with and without Special Educational Needs (SEN) in England during the COVID-19 lockdowns: a qualitative study. Current Psychology, 1-16. https://doi.org/10.1007/s12144-024-06954-x

Schlieber, M., & Han, J. (2021). The Role of Sleep in Young Children’s Development: A Review. The Journal of Genetic Psychology, 182(4), 205–217. https://doi.org/10.1080/00221325.2021.1908218

Scott, E. K. (2018). Mother-ready jobs: employment that works for mothers of children with disabilities. Journal of family issues, 39(9), 2659-2684. https://doi.org/10.1177/0192513X18756927

Tse, A. C., Lee, P. H., Zhang, J., Chan, R. C., Ho, A. W., & Lai, E. W. (2022). Effects of exercise on sleep, melatonin level, and behavioral functioning in children with autism. Autism, 26(7), 1712-1722. https://doi.org/10.1177/13623613211062952

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