SEND and joining up education, health and care for seriously ill children

Single, joined-up education, health and care (EHC) assessments, plans and personal budgets for children and young people up to the age of 25 are only available to children and young people in England who have a special educational need (SEN). Together for Short Lives has welcomed the government’s proposals to improve the special educational needs and disability (SEND) system for children, young people and families in England. However, we are calling on ministers to set out a clearer vision of joined-up assessments, plans and services for seriously ill children across education, health and care.

The Department for Education (DfE) consulted the public in July 2022 on a series of proposals that were set out in its SEND Review: Right Support, Right Place, Right Time’ green paper. Together for Short Lives responded to this consultation, you can read our response to the consultation here.

In the paper, the government acknowledged that:

• too often, children and young people with SEND feel unsupported
• too many parents are navigating an adversarial system, and face difficulty and delay in accessing support for their child
• the pandemic has disproportionately impacted children and young people with SEND, exacerbating the challenges that already existed within the system.

DfE’s subsequent SEND Improvement Plan includes a focus on making sure mainstream schools have the resources they need to help children access what they need:

• DfE will work with stakeholders to deliver a standard education, health and care plan (EHCP) template, with supporting processes and guidance from 2025.
• The national system will provide clarity on the resources available to deliver the right provision, for example, by ensuring that the new SEND and Alternative Provision National Standards are clear on which budgets should be used to provide different types of support.
• National Standards will place a greater emphasis on the role mainstream settings play in providing quality first teaching and evidence-based SEN Support.
• The national standards will be supported by new SEND and Alternative Provision practice guides for frontline professionals and an amended SEND Code of Practice.
• DfE will publish guidance to support effective transitions between all stages of education, and into employment and adult services.
• DfE will increase core school funding by £3.5 billion in 2023-24, of which almost £1 billion will go towards high needs.
• DfE will fund up to 5,000 early years staff to gain an accredited Level 3 early years SENCo qualification to support the early years sector, with training, running until August 2024.
• In partnership with NHS England, as part of their £70 million Change Programme, DfE will pioneer innovative practice through running Early Language and Support for Every Child (ELSEC) pathfinders to improve access to speech and language therapy for those who need it.
• Develop a system of funding bands and tariffs so that consistent National Standards are backed by more consistent funding across the country.

At both national and local level, responsibility for the support that disabled children need – including those with life-limiting conditions – sits with a range of organisations. All too often, the needs of disabled children and their families are not the priority within those services; and no-one sees it as their responsibility to ensure that services join-up and meet the needs of families.

The existing law related to disabled children and their families stems from over 10 different Acts of Parliament, regulations and guidance which have developed over the past 50 years. It is difficult for parents to navigate; and it leads to different services and agencies shifting responsibility between themselves, and with families falling between the gaps.

We welcome minsters’ decision to publish the SEND improvement plan and their ambition for a more clear, consistent and better quality SEND system. They acknowledge the way in which the current SEND system is failing, including for families of children and young people with complex life-limiting and life-threatening conditions. The maze of education, health and care services they need to navigate further reduces the precious, limited time that they have with their children.”

We also share DCP’s concern that parents only being able to choose a school from a list of appropriate placements could potentially restrict their choice.

We call on the government to:

• set out a vision for what an integrated system is for all disabled children, not just those with a special educational need; this should include making sure all seriously ill children in England have the right to an integrated assessment, plan and personal budget
• work with parents to clarify existing legal rights and entitlements
• make disabled children a priority across government, at both national and local level.

The success of the SEND reforms should be judged on whether they lead to a more joined up system of assessments, plans and services for children with the most complex needs and their families across education, health and care. As vital as educational attainment and routes to employment are, the ultimate test of the SEND system should be whether it helps disabled children and young people lead as fulfilled lives as possible and achieve the outcomes that are important to them.