Action Cerebral Palsy has submitted a response to the Government Consultation on the proposed SEND Reform: Putting Children and Young People First.
We welcome the Government’s ambition to improve SEND support but urge parliamentarians to ensure the reforms work for children with cerebral palsy (CP): a low-incidence, high-complexity condition spanning movement, communication, learning, health, self-care, fatigue and sensory needs. Cerebral Palsy (CP) is a lifelong and fluctuating neurological condition which is the most common cause of physical disability in childhood. The condition is caused by abnormal development or damage to the parts of the brain before, during or soon after birth. CP primarily affects muscle tone, balance, posture and movement but can also encompass several neurological disorders which can affect all aspects of development in the growing child. Children with CP can have a range of issues with communication, cognition and learning, hearing or sight, and difficulties with sensory processing. For these children, detail is everything: the right seating, mobility aids, Augmentative and Alternative Communication (AAC)/assistive technology (AT), skilled support to access the curriculum, therapy, trained staff and access to specialist teaching and placement can be the difference between meaningful education and mere attendance.
SEND reforms that can address the needs of the most complex children will work for ALL children. In order to safeguard the needs of these complex children, Action CP would like to see:
- Individual need first: Assessment must focus on functional needs and barriers to learning and participation, not diagnosis alone. National standards and packages must not prevent bespoke provision when the child needs it.
- Joined-up specialist support: Experts at Hand must include the full CP workforce working in an interdisciplinary way at both individual and whole setting level: specialist teachers, physiotherapists, occupational therapists, speech and language therapists, AAC/AT experts, school nurses, trained teaching assistants and third-sector specialists.
- The NHS England CP commissioning framework should inform integrated education, health and care planning.
- Accountability for families: Families need clear, jargon-free plans with quantified provision, named professionals, resourcing, review dates, accountability and escalation routes. Parent-commissioned reports and evidence of what has worked for the child must be considered in full.
- A shared, collaborative, proactive, “can do” mindset from all responsible for supporting children with SEND to end the years of adversarial challenge that families have experienced.
We are deeply grateful to the parents in our community who shared their time, personal stories, and lived experiences of the current SEND system. Their insights are vital in helping us understand how the proposed reforms might impact their children’s access to education. Our work builds directly upon:
- The recommendations of the All-Party Parliamentary Group (APPG) on Cerebral Palsy
- The work that is already happening within the NHS and the new NHS England Commissioning Framework for Services for Children and Young People with Cerebral Palsy
- The Children’s Commissioner’s Report on the Waiting times for assessment and support for autism, ADHD and other neurodevelopmental conditions
- Public Accounts Committee report into the SEND Crisis
- Education Select Committee report on Solving the SEND Crisis
We remain committed to represent children with neurodisability, including the 30,000 children and young people with cerebral palsy, throughout the reform process and to support those developing policy and practice in any way we can. To see our response to the consultation in full, our briefing to Parliamentarians about these reforms and our explanatory notes in support of our consultation response, please see below.
