The numbers of children and young people with complex needs and/or life-limiting conditions have increased from 49,300 to 73,000 since 2004, according to a new report.
Understanding the needs of disabled children with complex needs or life-limiting conditions, written by Anne Pinney and commissioned by the Council for Disabled Children (CDC) and The True Colours Trust, is the first analysis of its kind for a decade.
The new total of 73,000 consists of:
- 10,900 children with profound and multiple learning difficulties.
- 32,300 children with severe learning difficulties.
- 27,500 children with autistic spectrum disorders in special schools.
- 2,300 children with multi-sensory impairments.
An underlying reason for the rise in numbers, the report says, is increased life expectancy for babies born with complex disabilities and congenital conditions such as cystic fibrosis.
The research was commissioned to establish a definitive picture of the data available and what it reveals about these children and young people. Researchers also hope it will help identify developments and/or changes in the population, gaps in current data collection, and bring about improvements.
Data on disabled children with complex needs and/or life-threatening conditions is extremely scarce, so the current analysis is based on school census data on special educational needs (SEN) and other data.
The report says true numbers may be greater, since many children with the most complex needs are educated in the Independent Special School Sector where schools are not required to return detailed data on these students.
‘Another way of estimating the number of children and young people with complex needs,’ it adds, ‘is to look at the size of the special school population…Nearly 118,000 children and young people with statements or Education, Health and Care (EHC) plans are placed in specialist schools and colleges.’
The report suggests that while the numbers of children with complex needs and/or life-threatening conditions are growing, the services they rely on may not have kept pace. The proportion of children with a disability supported by children’s services is steadily falling, and now stands at just 0.4 per cent of all children aged 0 to 17 years. This suggests that qualifying for local authority help may be increasingly difficult for disabled children and their families.
Dame Christine Lenehan, Director of CDC, 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 National Health Service, Department of Health and DfE to improve how data about disabled children with complex needs is collected and shared.
Responding to the report Cllr Richard Watts, Chair of the Local Government Association’s Children and Young People Board, said:
Councils were clear with the Department for Education (DfE) at the time that implementing the Special Educational Needs and Disability (SEND) reforms in the Children and Families Bill was significantly underfunded by the Government and this has been borne out in reality.
The transition process from SEND statements to EHC Plans is complex, but councils are doing everything they can within the resources available to make sure children are being supported and getting the help that they need.
In addition, we believe the DfE’s proposed changes to high needs funding will reduce council and school flexibility to make additional funding available where there are rising demands for SEND support, making existing problems even worse.