8 April 2024

Data from the Nuffield Trust on the number of people in England waiting for an assessment for autism or attention deficit hyperactivity disorder (ADHD) shows that waiting times are longer than ever, with more people than ever before waiting for assessment and lengthy waiting times for a first appointment. 

This situation is obviously far from ideal for children and adults on the waiting list, but delayed diagnosis is being misleadingly presented as a barrier to receiving health and education support. The chief executive of the Nuffield Trust is quoted by the BBC as saying that long waits have a “serious effect” on children in particular, “as many schools provide extra support only after a diagnosis”. The quote says: "We've certainly got to have a different approach within educational services that says you don't need that letter in your hand.” 

The flaw in this argument is that we already have a legal system that doesn't require a “letter in your hand” to get SEN Support in school, or an EHC plan, or to exercise the rights that go with the protected characteristic of disability.  

Neither the definition of ‘special educational needs’ under section 20 of the Children and Families Act 2014 nor the definition of ‘disability’ under section 6 of the Equality Act 2010 requires a specific diagnosis. This is just as well, given that the underlying cause of an individual child or young person’s difficulties or impairments might not ever be known. (According to Great Ormond Street Hospital for Children, 6,000 children a year are born in the UK with a genetic condition so rare that there is no diagnosis available. These children may still need high levels of education and health support.) 

A child does not need a formal diagnosis in order to receive support in school. Support should be available based on the child’s needs. The relevant issue is the difficulties and challenges a child faces, which do not change if and when a diagnosis is given. 

However, without an appropriate professional assessing what the individual needs of a child or young person are, it can be difficult for school teachers and college tutors to know what educational support they should be offering – and too easy for the needs of children and young people to be denied or ignored.  

The suggestion that a "letter in your hand" is necessary in order to access educational support, and the reality that it’s often very difficult for children and young people to see professionals with the appropriate skills to determine their educational needs, points to a widespread failure to follow the law. 

This is not just because individual children and young people with suspected or known special educational needs routinely face unlawful barriers to getting the right educational support. It’s also because existing statutory duties on local authorities and the NHS under sections 25 and 26 of the Children and Families Act 2014 to cooperate and jointly commission provision are often disregarded. 

At IPSEA, our view is that the “different approach within educational services” that the Nuffield Trust is calling for should take the form of schools, local authorities and NHS bodies understanding the law as it's currently written and following it. It’s also essential to stop describing as “demands” the situation where people ask for the education, health and social care services they are entitled to, and start describing it as service failure. 


About the author

Alex is a solicitor in IPSEA's legal team. She is responsible for delivering training to new volunteers and ongoing training to existing volunteers. She delivers IPSEA's programme of external training to parents, schools, SEN specialists and local authorities. As well as training, Alex also provides legal support to the IPSEA volunteers and monitors and supervises their casework and helpline advice as well as supporting the provision of legal updates. Alex creates legally based written resources and is part of the team undertaking national and local policy work.

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