Anne Pinney calls for better data on the changing needs of disabled children and their families

Ever found yourself asking the same question time and again, without getting a decent answer?

I’ve been lucky to be involved in special educational needs (SEN) and disability research for nearly two decades. In all this time, we’ve never been able to say with confidence how many disabled children there are in this country, what their needs are or how this is changing.

I have lost count of the number of SEN professionals I have interviewed who have mulled over two trends in the needs of the children they see. First, there are many more children with autism. Second, there are more children with complex disabilities, some needing highly specialist support.

Two years ago, the Council for Disabled Children and True Colours Trust asked me to see if national data could shed any light on this.

For now, the most useful data on trends in childhood disability are the SEN statistics that schools report. A sharp rise in autistic spectrum disorder (ASD) is the most striking trend in the data. From 2004 to 2016, the number of children with a statement or education, health and care (EHC) plan whose main need was ASD rose by 54% in primary schools, 182% in secondary schools and 219% in special schools. In 2018, there were over 66,000 school children with an EHC plan whose main need was ASD, or nearly 120,000 if we include children on SEN support.   

Over the same period, the number of children with the most complex needs (profound and multiple learning difficulties, severe learning difficulties, multi-sensory impairment, children with ASD in special schools) increased by nearly 50 per cent. This may reflect advances in healthcare: more children survive very premature or difficult births and life-expectancy has improved greatly for young people with conditions like Down’s syndrome, Duchenne muscular dystrophy and cystic fibrosis.

These are really important trends, for which local commissioners need to plan ahead. Failure to do so can leave families feeling they need to fight every step of the way and deny disabled children the chance to grow up and thrive in their home community. Gaps in crucial services like short breaks, speech and language therapy, mental health and positive behaviour support lead to costly specialist placements, sometimes miles from home, and divert funds from developing sustainable local services.

We urgently need better data on the changing needs of disabled children and their families. How can we make this happen?

SEN data needs to include the 16,000 children with EHC plans placed in independent schools, in some of the most specialist, high-cost placements. We know very little about their needs and outcomes.

Health providers need to gear up to report paediatric disability data and commissioners should require this as part of their contracts. This will provide a fuller picture of the multi-faceted needs of disabled children and their families, as experience in Sunderland shows.

Another important development to look out for in 2019 is the integrated ‘data dashboard’ being developed by the Council for Disabled Children and partners in health and local government. This aims to give local commissioners ‘a single source of truth’ on the needs and outcomes of disabled children and young people in each area. Following a grant from the True Colours Trust, the Council for Disabled Children are also now able to develop a data service, which consists of a new data bulletin and a forum. 

About the author 

Anne Pinney wrote the 2017 report “Understanding the needs of disabled children with complex needs or life-limiting conditions” and acts as a “Data Champion” on behalf of CDC and the True Colours Trust to support improvements in national data on disabled children and young people.