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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 until 22 July 2022, on a series of proposals that are 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 acknowledges 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.

Wide-ranging proposals set out across more than 100 pages include plans to:

  • Set new national standards across education, health and care for children and young people with SEND: ministers will legislate and revise the SEND code of practice to put the standards on a statutory footing.
  • Simplified, digitised education, health and care plans (EHCP): the government states that this will make plans more flexible, reducing bureaucracy and supporting parents to make informed choices.
  • A new legal requirement for councils to introduce ‘local inclusion plans’: the government states that new local SEND partnerships will be established to bring together early years, schools and post-16 education with health and care services to develop the plans, and establish who is responsible for meeting national standards within an area.

In the green paper, DfE states that it is working with the Department of Health and Social Care to provide new statutory guidance to new local NHS planning and funding organisations (integrated care boards, or ICBs). This will set out how the statutory responsibilities for SEND should be carried out within ICBs, including by identifying an executive lead for SEND who sits on the board. The way new standards are applied in children’s social care will be informed by the government’s response to Independent Review of Children’s Social Care.

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 long-overdue SEND review 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:

  • provide more clarity to ensure that proposals for banding and price tariffs for high needs funding are flexible enough to meet individual children’s needs
  • make sure the proposal for compulsory mediation does not restrict access to the tribunal and make it harder for parents to get the support they need
  • 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
  • commission a review of health and social care law, to simplify and strengthen rights and entitlements for disabled children and their families, including seriously ill children
  • 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.

Policy and influencing