From Croydon to parliament: Shaping the future of SEND support
Croydon Health Services NHS Trust community Director for Learning Disability and Autism invited to attend parliament by All-Party Parliamentary Groups (APPG) for Learning Disability Autism and ADHD to discuss SEND reform:
James Kiamtia-Cooper, Associate Director with ICORs attended parliament and put questions to MP’s on SEND reform and cross systems approaches around the issues facing young people and families who are autistic, have ADHD or learning disabilities. A cross-section of professionals and those with lived experience joined the joint meeting to bring together APPGs for learning disability, autism and ADHD. Key areas of discussion in the room raised the subject of reform and government consideration to ensure a focus on post 16 to 19 up to age of 25 were considered in terms on special education within the draft white paper consultation. A key focus was also upon the funding for SEND education and diagnostic assessments and to ensure private provision was aligned with public services in terms of cost and continuity of provision.
It was strongly voiced in discussion in the room that provision should focus on social and emotional wellbeing and neurodevelopment affirming support through life skills support and by empowering service provision in education, local authorities and health. It was voiced cross systems planning and SEND reform requires such alignment between public services to ensure holistic support is ensured.
A reform of language and full consideration of terms used with ADHD, Autism and learning disability citizens within SEND provision, such as the term ‘complex needs’ could be viewed as stigmatising and lead to an unintentional consequence of professionals viewing the child or young adult as too complex for services or mainstream education settings.
A question posed to MP’s and panel members of the APPG’s including Georgina Gould MP (Minister for Education) by James Kiamtia focussed upon systems wide collaboration within a community model’s approach. The Question posed “How will the draft SEND white paper consider the key relationship need within health (NHS) with those deemed to be “too complex” within education experiencing behaviours of distress or challenge? In particular, the vital investment in neurodevelopmental affirming behavioural (as opposed to mental health) services for autistic children and young adults and those with co-occurring learning disabilities or ADHD?”
This question was an area of parliamentary focus and an area of provision not fully expanded within the draft paper which was also keenly noted and voiced by members within the joint APPGs as an area for fuller consideration.
The response from the Minister of Education noted a key focus was needed for cross systems solution within the SEND strategy between social care, health education and wider community. Areas of enhanced training in autism, ADHD and learning disability are needed in education, drawing upon multi-professional expertise working in co-production. The role of health, from psychologists, nurses and occupational therapists were all part of the solution to enhancing life affirming experiences for children and young adults with neurodevelopmental areas of support.
A greater focus on transition planning and support from 14 years onwards within further education settings in the above areas was also a focus of discussion and energy within the joint APPG discussion. It was also widely recognised that there was considered benefit from parent/carer lived experience in the form of peer support workers to share support and experience from previously going through a system was a key element to consider for future service design and as a support for the young neurodevelopmental children or adults within education and as mechanism to alleviate crisis.
Lived experience should ideally be an essential part of future health and education design. Social stigma and misunderstanding is recognised in society around autism, ADHD and learning disability and the presence of peer support breaks down barriers and anxiety experienced by families.
Moreover, it was also voiced within the forum that future service models have a requirement to focus upon social and emotional neurodevelopmental affirming support through empowering individuals and their families in understanding their own neurodevelopmental condition and by developing life skills and self-support approaches. To move away from a medical focus whilst being mindful of mental health needs and neurodevelopmental co-occurrence, and to reduce a focus upon a mental health framework as a starting point for neurodevelopmental service design. Creating greater awareness and training across all the system and society is a big part of this.