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A report out today is the first analysis in 10 years of the numbers of children and young people with complex needs or life-limiting conditions and estimates that numbers have increased dramatically by over 50% since 2004, from 49,300 to 73,000 children and young people.

The underlying reasons for the increase in numbers include increased life expectancy for babies born with complex disabilities and congenital conditions such as cystic fibrosis.

Together with the Council for Disabled Children,  we commissioned this piece of research to paint a definitive picture of the type of data that is available to understand what this data tells us about the population and whether it shows us anything useful in terms of developments and/or changes in the population. It has identified clear gaps in current data collection and allows action plans to be developed with key stakeholders to drive forward improvements.

Data on these children is extremely scarce, so the report uses school census data on special educational needs, and other data, to shed light on trends. It finds that the numbers of children with complex forms of autism have more than doubled since 2004, to 57,615.

Worryingly the swell in numbers may actually be greater, since many children with the most complex needs are educated in the Independent Special School Sector and Department for Education does not require those schools to return detailed data on these pupils.

The report, written by Anne Pinney, suggests that while the numbers of these children are growing, the services they rely may not have kept pace. The proportion of children with a disability supported by children’s services is steadily falling, and now stands at 0.4% of all 0 to17-year-olds, suggesting that qualifying for local authority help may be increasingly difficult for disabled children and their families. Similarly, 41,500 children and young people with a learning disability or autism are currently on waiting lists to see a mental health specialist.

Dame Christine Lenehan, Director of the Council for Disabled Children said:

‘You’d think that because these disabled children are known to health services, social services and education teams, we’d have a good idea of the numbers involved. That simply isn’t the case. The national data on disabled children is not fit for purpose: it has gaps, anomalies and inconsistencies, and raises the question how can we plan to meet the needs of these children and their families, when we don’t know what those needs are?’

The report’s recommendations were drawn up with support from a panel of experts and call for urgent action by the NHS, Department of Health and Department for Education to improve how data about disabled children with complex needs is collected and shared.

Click here to download the report