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Understanding the needs of disabled children with complex needs or life-limiting conditions

What can we learn from national data?

There are rising numbers of disabled children with complex needs and/or life-limiting conditions, who, with their families, are likely to need support from health, education and social care continuously or at times throughout their life.

More than a decade ago, the National Service Framework (Standard 8: Disabled Children and Young People and those with Complex Health Needs) noted:
Three years later, Aiming High for Disabled Children: Better Support for Families (DfES, 2007) estimated that around 100,000 disabled children had complex care needs.

Similarly, Better Care, Better Lives (DH, 2008), informed by the Independent Review of Children’s Palliative Care Services, noted the challenge faced by service providers and commissioners due to: 'the change in the profile of children with life-limiting or life-threatening conditions over the last 20 years due to technological advances and increased survival rates of low-birthweight babies.'

These seminal policy documents are still highly relevant today, but over the past decade, policy attention has shifted to other vulnerable groups (e.g. looked after children, troubled families) while budget cuts have eroded local services.

Our analysis suggests that 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.

What can we learn from national data (education, social care and health) about these trends?

School Census data shine some light on these trends. The School Census collects detailed data on the great majority of school children in England, including information on their special educational needs (SEN) using a standard list of terms (Annex G). Usually only a child’s ‘primary need’ is reported.

Some primary needs are associated with complexity: on average, children with these needs are most likely to attend special schools and most likely to receive specialist support provided through an Education, Health and Care (EHC) plan or a statement.5 Based on this approach, a narrow estimate of the number of school children (broadly, aged 5-16 years) with complex needs is 73,000, made up 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 schools7
• 2,300 children with multi-sensory impairments.

The equivalent figure in 2004 was 49,300. This suggests that the number of school children with complex needs in schools in England may have risen by nearly 50 per cent in just over a decade.

The actual number is higher, as children with other primary needs may have complex needs and because there are some important gaps in School Census data.

• 13,500 children with statements/EHC plans placed in independent schools, which provide some of the most specialist placements

• 23,100 more young people aged 16-25 years with statements or EHC plans who are not included in School Census data, including over 1,000 aged 20-25 years.

Another way of estimating the number of children and young people with complex needs is to look at the size of the special school population (acknowledging the great variation in placements at local level11). Nearly 118,000 children and young people with statements or EHC plans are placed in specialist schools and colleges. Special schools now cater for many more children with complex needs than in 2004 (Chart 1). The number of children with complex needs in mainstream schools has also risen over the same period.

These trends are not evident in the social care data, partly because so few disabled children are assessed as children in need (0.4 per cent of 0-17 year olds) or looked after under the Children Act 1989 (with only 2,250 children nationally whose main reason for being looked after is disability). It is clear from the data analysed that thresholds for support from social services for disabled children and their families are high and vary widely from area to area. This may reflect tight local authority budgets and more positively, the roll-out of Early Support.