Kingston SEND Parent Carer Forum recently surveyed parent carers about their experiences of Inclusion and Schools and what they think needs to be in place to support their children. So far we have had over 50 responses, many of which are really detailed with your lived experiences. We are really grateful to have heard from so many people and know that it is often quite difficult to share and relive difficult times in your child’s life. It is really important that we understand these experience. There were some key themes emerging in what you told us so here is a word cloud of what we have heard so far.

Making the environment accessible

What was very clear from parent carers was that the environment of schools would need to change to accommodate more children with special educational needs. The key words that came up were “Too busy” and “noisy” and that many children would need a “quiet space” in order to be successful in this environment. We also noted that many people had suggestions involving staffing and the running of the schools to help accommodate the needs of their children. 

Some suggestions worth mentioning including having schools set up so that teachers moved around to them, particularly in secondary schools where the environment was mentioned a number of times.Where parent carers spoke about “smaller classes” there was also a suggestion of “roaming teacher” and “more teaching assistants” to enable their needs to be met. 

Sensory Environment

As we know a high percentage of children with SEND on SEN Support or EHCPS in Kingston have Autism and/or ADHD (the conditions frequently occur together.) The Autism and ADHD All Ages Strategy makes it clear that it is a predominant need in our area – 1011 children with an EHC plan in the 2023 academic year had a primary need of Autism and 834 autistic children and young people receiving, more clear information on ADHD needs to be collected All Ages Autism and ADHD Strategy 2025-2030 .Given the impact of sensory differences on this cohort of children and young people, it is not surprising that  parent carers told us that to feel safe and supported children would need the appropriate sensory environment and have “sensory breaks” supported. They also shared many experiences of “masking” and that “quiet children” could be overlooked. It is noted in the SEND White Paper Consultation that schools will have Inclusion Bases which would allow for some children at the “Targeted Plus” level to access a space designed to meet their needs. What is clear from the responses  we received that the environment set up was a concern for the majority of our respondents. As such, we have spoken to Achieving for Children about being involved in the Universal Offer across schools will need to go much further to support SEND children in mainstream school.

Training Needs

Parent carers told us that there were a number of training needs in the schools, including that training should be available to all staff, not just teachers. In addition there were a number of conditions that were not understood, such as PANDAs and Pathological Demand Avoidance. Where staff applied one strategy they had learned for a child with Autism, this was then inappropriate for another child. In addition, parent carers were concerned that “guesswork” was used to apply strategies. Additionally staff needs to be trained for medical conditions, it was shared that medical conditions were not covered in the current White Paper and that is a concerning oversight.

In order to support the diverse needs of your children, it is clear that expert advice would be needed. The SEND White Paper Consultation suggested that an “Expert at Hand” offer would be available for those who needed a more enhanced support  (again Targeted Plus) Parent carers however felt that there needs to be “expertise within the school on site”. Parent carers talked about their children needing support from speech and language therapy, educational psychology, occupational therapists which are all expected to be included in the Expert At Hand Offer. However, a further suggestion was that Mental Health support needs to be considered including someone with expertise with Emotionally Based School Avoidance. As the offer is to be developed in the next year with regards to this Experts at Hand, it is crucial that we take all your suggestions forward as part of the Local SEND Reform Plan in addition to making the appropriate response to the SEND White Paper Consultation.

Whole School Experience

It was clear from the responses we received that the whole school experience mattered for parents so that their children could “thrive not just cope” – this includes access to things like After School Clubs, appropriate space at lunch time and Reasonable Adjustments that allow for children to be part of the school activities like trips. Some parents shared that they needed to be included in the planning of these activities and we had examples where parent carers had had to go out of their way to make it possible for this child to be included. Inclusive practice would mean that they whole school experience is designed around those with special educational needs and many examples are provided in the Ordinarily Available Offer. The government has committed to updating guidelines including in the SEND Code of Practice and strengthening the Reasonable Adjustments understanding with these reforms. There is a clear role for parent carers to be part of these changes.

Communication

In the next question we put to parent carers we asked about family relationships with school. The majority of respondents suggested that there needs to be excellent home school communication at all settings. There were many suggested examples, but what was clear was that this should be consistent, written down and monitored so it is clear where advice is adhered to in schools. A key suggestion that came up was that all schools should have a communication policy and that this could lay out expectations and routes to speak to the right staff member at the right time.

In addition, parent carers spoke about being listened to. There were many examples given where respondents told us they had to “push” and were often “fighting for support.” They also spoke about very difficult circumstances when they were not believed. The biggest ask that comes from the respondents was “please listen to parents” – it is clear that we want to be considered experts-by-experience. The role of the Kingston Parent Carer forum is to encourage and support coproduction with parent carers. It seems very clear from what we have heard that our voice must be part of these changes, whether it is at a school level or with the strategic leadership. 

We really appreciate the time everyone has spent so far answering our questions and helping us be clearer about what Inclusion can and should look like in Kingston.