Fears that services are not keeping pace as number of disabled children with complex needs rises significantly

  • Dramatic 50% increase since 2004 – 49,300 to 73,000 children in England
  • 57,615 children with complex autism in schools in England, more than double the number in 2004.
  • Report questions whether Government, local authorities and commissioners understand the numbers of disabled children they are providing services for.

The first analysis of the numbers of disabled children with complex needs and life-limiting conditions in over a decade, estimates that numbers have swelled dramatically by over 50% since 2004, from 49,300 to 73,000 children and young people.

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

But data on these children is extremely scarce, so the report, commissioned by the Council for Disabled Children and the True Colours Trust, 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 the 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 assessed as ‘children in need’, 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.

Understanding the needs of disabled children with complex needs or life-limiting conditions is available from: www.councilfordisabledchildren.org.uk/help-resources/resources/data-report

About the Council for Disabled Children

The Council for Disabled Children (CDC) is the umbrella body for the disabled children’s sector and is part of the National Children’s Bureau. We want disabled children and children with special educational needs (SEN) to have full and happy childhoods; fulfil their potential; and be active within the community. We do this by influencing Government policy, working with local agencies to translate policy into practice and producing guidance on issues affecting the lives of disabled children.

For more information visit www.councilfordisabledchildren.org.uk

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