Missing data on disabled children raises concern that services cannot cope

Wednesday, February 22, 2017

There has been a dramatic increase in the number of school children living with complex needs, but information on them is scarce.

A new analysis on the numbers of disabled children with complex needs estimates that there are now 73,000 affected children and young people in England. This number has risen significantly, increasing by 50 per cent since 2004.

The report by Anne Pinney, which is the first in over a decade, has been commissioned by the Council for Disabled Children and the True Colours Trust, and questions whether the Government, local authorities and commissioners are aware of the disabled children they should be providing services for.

The report found that the proportion of children from birth to 17 with a disability who are supported by children’s services is steadily falling. This now stands at 0.4 per cent of all children assessed as ‘children in need’, and suggests that ‘qualifying for local authority help may be increasingly difficult for disabled children and their families.’

The report concludes, ‘There is an urgent need to sharpen the focus on disabled children and young people, in particular, the rising number of children with complex needs and life-limiting conditions. We need to know more about the numbers and needs of this cohort, how this is changing over time and what this may mean in terms of future demand for specialist services.’

It continued, ‘We believe that the messages emerging from this analysis, … have some important implications which need to be grasped by policy makers and service commissioners at the local and national level.’

The findings suggest the primary reason for this swell in numbers is due to various factors. ‘[This includes] increased survival of preterm babies and increased survival of children after severe trauma or illness.’ Increased dependence on assistive technology has meant that children and young people with life-limiting conditions like cystic fibrosis, severe cerebral palsy, and Duchenne muscular dystrophy also have improved life expectancies.

The paper, which shares the findings of data analysis conducted between August and October 2016, finds that the number of children with complex forms of autism has more than doubled since 2004, to 57,615.

The research also found ithat there is inadequate data on disabled children, which was subsequently unfit for purpose. With this in mind, school census data was also analysed, and provided a picture of the ‘great majority of school children in England.’ This included information on childrens’ special educational needs (SEN), where usually only a child’s primary need is recorded.

These primary needs are associated with complexity, and focus primarily on children who attend special schools, where they are most likely to receive support through an Education, Health and Care (EHC) plan or statement. This considered, the report gathered an estimate of 73,000 school children from five- to- 16 with complex needs, of which there were:

  • 10,900 children with profound multiple learning difficulties
  • 32,300 children with severe learning difficulties
  • 27,500 with autistic spectrum disorders in special schools
  • 2,300 children with multi-sensory impairments.

The report has suggested that the actual number of school children with complex needs is higher, as children with other primary needs may also have complex needs.

Looking at the size of the special school population, the report has discovered that nearly 118,000 children and young people with statements or EHC plans attend specialist schools or colleges, and that these now cater for more children with complex needs than in 2004. It also shows the number of children with these needs in mainstream schools has also risen since 2004.

The full report can be found here.

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