In this session, we discussed the support for children with additional needs.  The aim of the session was to ensure that children and young people had the opportunity to give feedback on the topic areas of an upcoming national survey, and to suggest questions they thought we should include. 

What we learned from the session:

• The group thought our topics areas were comprehensive and encompassed the key stages in seeking extra support.

• The group offered great insights to the questions the survey should be asking.

• The group suggested alternative avenues for future research, specifically the exploration of children and young people’s involvement in the assessment process of applying for an EHCP. 

• The Survey needs to be brief and to the point, as well as being made as widely accessible as possible, to ensure the Survey does not exclude key group of children and young people with SEND.

In this online consultation, parents and carers gave their opinions on the potential linkage of mother and baby records in ECHILD.  This potential linkage could also support sibling’s information being linked in one place.

What we learnt about views on the linking of a mothers' information to a child's record

• All of the parents and carers consulted were supportive of mother and baby records being linked in ECHILD.  40% believe that linkage should be allowed for research into specific topics, 60% believe linkage should be allowed on a routine basis for a wide range of research.

• Different research purposes for linkage were presented to FRAG:

  • 89% of parents and carers said they felt comfortable or very comfortable with linkage being used to understand how a mother’s health and behaviours may impact on a child's health and education.

  • 78% of parents and carers said they felt comfortable or very comfortable with linkage being used to understand the whole family including siblings, so that hereditary illnesses can be considered.

  • Similarly, 78% of parents and carers said they felt comfortable or very comfortable with linkage being used understand as much as possible about the mother at birth.  

What we learnt about views on a father’s information being linked to a child's record

• Currently, a father’s information is not stored on a child’s health record.  89% of parents and carers agreed that a fathers' information (i.e. their NHS number) should be recorded on birth notifications to enable more research.

In this session the team explored how a special school is run on a day-to-day basis.  This engaged Riverside's headteacher, teachers and teaching assistants and involved observing pupils during their school day.  

What we learned from the visit:

• 1:1 pupil support is minimised at Riverside, this is to balance stability vs dependence on just one individual.

• Riverside has comprehensive and strong links to the wider community, this supports regular input from the health and care services.

• Riverside provides a superb programme of extra-curricular activities and training for its pupils.

• We have a need to visit more schools across the country, to gain a better understanding of differences in Special Education Needs and Disabilities (SEND) provision, in both Special and Mainstream education settings. 

• When communicating with parents and carers, various communication platforms should be used.  Infrequent access to email is quite common. 

A follow up visit to Riverside is being arranged for later in 2022.  This will engage pupils with a survey to explore variations in SEND identification and provision (https://redcap.link/HOPEsurvey).   The next visits will also engage staff to discuss characteristics of health conditions needing SEND provision and the expected changes to outcomes from receiving support.

In this session the team explored the work within a mainstream school to support the inclusion of children identified with SEND.  This included a tour of the school, dropping into lessons and meeting pupils, and also meeting with the headteacher, SENDCo and Director of Inclusion and community to understand more about SEND provision at UCPS.

What we learned from the visit:

• UCPS is a little distinct from many primary mainstream state schools, having opened recently in 2015 and through its close links to the University of Cambridge Faculty of Education in Initial Teacher Education (more information found here: https://universityprimaryschool.org.uk/about-our-school/).

• Learning Coaches (TAs) have a dynamic role working with multiple children across classes and also perform weekly personal and professional development training.

• There is great the complexity in the daily decision-making in schools, including around SEND support and independence plans.  The use of administrative data to define and measure what is happening is not a clear-cut task.

• UCPS’s approach to inclusion is very impressive, spending time at UCPS was very uplifting experience.

In this session we talked to parents/carers of children who receive special educational needs (SEN) provision to learn about their experiences. We wanted to understand whether receiving SEN support made a difference to their child’s and family’s health and wellbeing, and how was it noticed that their child needed support. 

What did we learn? 

• Parents and carers have to navigate complex and often unfriendly system, and become advocates for their children. Good and supportive SENCOs can made a difference to their and their children’s experience.  

• There was a varying level of satisfaction with education, health and care plans (EHCPs); while some families experience good support, others find EHCPs hard to read, not specific to their child and their needs. Having an EHCP does not necessarily mean appropriate level of support suited to the child’s needs. Often, EHCPs are only allocated at crisis point, triggering involvement and funding form local authority. 

• The support for pupils with EHCPs is not always suited to their needs and parents need to advocate for their children. Translating health needs into education setting is challenging (even when medical documentation stating needs is provided), the systems are not well coordinated.  However, once children receive appropriate support tailored to their needs, their learning, confidence, happiness, functioning improves. 

• Some children had good support and educational experiences during COVID pandemic, but changes in routines and level of available support due to return to school have impacted their mental health.