There is a lot to welcome about the government’s recently published plan to reform the SEND system in England. The reform plans that the government has set out are ambitious, but they are necessary if we are to fix a system under intense strain. However, there is a significant blind spot in what the government has set out around how children with long term illnesses fit into the newly designed structure. As the government moves from its policy design phase into the implementation of its reforms, it will need to ensure that steps are taken to ensure that children with long term illnesses aren’t overlooked or fall through the cracks.

There remains an overwhelming consensus – amongst parents, schools, local authorities and policymakers – that the current system for supporting children with SEND is no longer fit for purpose. Costs are rising rapidly, putting pressure on local authority budgets, and parents are having to fight lengthy battles to ensure that the support to which their children are entitled, is delivered.

The reform agenda is being driven by two underlying principles. Firstly, to create a system that is financially sustainable. Demand for SEND support has surged over the past decade, with the number of children holding Education, Health and Care Plans (EHCPs) rising dramatically, driving total SEND spending up to more than £10 billion a year. With councils legally required to meet the requirements set out in all EHCPs regardless of funding levels, most local authorities have accrued significant budget deficits and accumulated shortfalls are projected to reach £14 billion within the next few years. The government has already announced measures to write-off 90% of historic SEND deficits up to March 2026, and that it will be taking responsibility for the funding of SEND services back into central government control from April 2028.

The second, more ideologically-driven principle is about driving up levels of mainstream inclusion, with an ambition for more children and young people to be supported in mainstream educational settings. Efforts to drive earlier identification of additional need and achieve higher levels of mainstream inclusion sit at the heart of the government’s proposed reforms to the SEND system. The government has said funding will flow earlier, rather than at a point of crisis, and has cited packages including over £200 million for Best Start Family Hubs, £1.6 billion for inclusion funding over the next three years through its new Mainstream Fund, £1.8 billion for Experts at Hand, and £3.7 billion in capital funding to create tens of thousands of new places in Inclusion Bases in mainstream settings and make buildings more accessible.

The reforms emphasise earlier identification and universal support for SEND via Individual Support Plans (ISPs), as well as additional support via the Targeted, Targeted Plus and Specialist tiers, with the latter reserved for those with more complex needs. There is lots of language in the reform plans about defined packages of support and national frameworks, which risks creating a system that prioritises standardisation over flexibility and adaptability. This may improve consistency at a national level, but it risks reducing the system’s responsiveness to non-standard needs.

The elephant in the room here is that children with long-term illness don’t fit this model, which is designed around predictable, stable needs that fit neatly into the proposed tiered support framework. Many children’s needs will be too complex for universal support, and not predictable enough (based on the parameters of the new framework) for a formal plan to be put in place. Children with long-term illnesses have needs that are often episodic, fluctuating, and sometimes invisible. The risk is that, in reforming the SEND system, policymakers further marginalise a group it doesn’t fully see.

We’re in danger of creating a ‘missing middle’ of children and young people whose needs are not recognised or built into the new system – those that fall between the low-level school support set out in the Universal or targeted tiers and those with high-threshold statutory plans. The more targeted availability of EHCPs, for those on specialist provision packages, means many children with long term illnesses may not meet the required thresholds for support, and because their needs may be intensive but temporary, are at risk of being under supported during critical periods.

Another problem being baked into the new reforms is a direct result of the way the government appears to view (and will measure) inclusion. A system that better supports children and young people in mainstream schools is absolutely the right ambition, but in practice the way inclusion is talked about in the reform plans is still heavily tied to physical attendance and being in a classroom setting. For children with long-term illness, that’s not always possible. Inclusion cannot just mean being in school – it must mean remaining connected to and able to access education, even where physical attendance is not possible. Flexibility is exactly what this cohort needs, and often requires adjustments in support week to week, different levels of intensity of support, and the ability for the system to respond rapidly when circumstances or needs change.

So why does this matter, and how can government address these issues?

Under the new plans, schools are going to be asked to do more to promote inclusion, but without the right tools, they will struggle to support this group effectively. Bright Futures’ report, The Impact of Long-Term Illness on Children & Young People’s Education in the UK sets out what the social and economic impact on this group of young people look like in stark terms if they are not supported to access education. This isn’t a niche issue – the knock on effects of not getting this support right, for the young people, their families and the wider economy is significant.

To make sure that children with long term illnesses are captured by the reforms, and to make sure the needs of this group of young people are rightly met, there are several steps the government could take as it progresses its reforms:

• Ensure there is a clear policy definition of SEND, which includes children with long term illnesses. This definition should be communicated with schools and other stakeholders in the SEND system, with dedicated guidance in place to ensure this cohort is not forgotten or left unsupported.
• Build fluidity into the SEND system as currently proposed to make sure it is sufficiently responsive to a diversity of need. In addition to the universal, targeted and specialist layers of support, there should be a flexible, time-bound support layer that includes rapid-response interventions, reintegration pathways and short-term funding allocations.
• Decouple inclusion from physical attendance, with a broader definition built around education participation. This should include remote learning and hybrid models. Part of this should be about measuring the right outcomes – moving away from traditional metrics of physical attendance and attainment, towards continuity of learning and reintegration success.

Inclusion policy cannot just be about where children are educated. For this cohort, it needs to be about how education adapts to them. There is a lot in the government’s SEND reforms which should be welcomed. We now need to make sure that they work in the interests of all children with additional learning needs. If the ambition is a truly inclusive system, it cannot be designed only around children who can attend school consistently. The real test of these reforms will be how they work for those who can’t.

Written by Lizzie Wills, Senior Partner at GK Strategy