Families of children with disabilities and complex care needs are finding it increasingly difficult to access specialist local authority help, a study has suggested.
A National Children’s Bureau (NCB) report estimates there has been a 50% rise in the number of disabled children in England with complex needs since 2004, including a doubling in the number of children with complex autism.
However, despite the increase, it says official data shows proportionately fewer disabled children appear to qualify for council help, suggesting services are setting higher thresholds for accessing care.
As as result, families and children may be missing out on help provided by personal assistants, assistance in the home, overnight support services and respite care, the NCB says.
“Between 2011 and 2015, overall the number of children in need with a disability fell, while the total number of children in need rose,” the report says. “This suggests that thresholds for assessing disabled children as children in need of support from social services are getting higher.”
The NCB, which drew on school census and social care data for its study, warned that the available information on children with complex needs was “not fit for purpose”, undermining efforts to effectively provide services for disabled youngsters.
It said: “We need to plan ahead to meet their needs, supporting children and families before they reach crisis point, where a residential placement or admission to a mental health inpatient unit becomes the only option.”
Dame Christine Lenehan, director of the Council for Disabled Children, said: “The national data … 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 study found wide variations between authorities in the proportion of children in need with a disability – ranging from 3% in the London borough of Lambeth to 31% in Windsor and Maidenhead, suggesting that there is a postcode lottery in access to care for this cohort of children.
The report says the variations may reflect tight budgets and local differences in eligibility for accessing services, as well as variations in local practice – some councils will offer more early support to families before children get to the stage where they are formally registered as in need.
The NCB estimates that the number of disabled children and young people with complex needs has swelled since 2004, from 49,300 to 73,000 – although it warns this may be an underestimate as it does not include children in private specialist schools for which there is no detailed data available.
The underlying reasons for the increase include increased life expectancy for babies born with complex disabilities such as cystic fibrosis and severe cerebral palsy, and improved survival rates for babies born pre-term or with congenital conditions.
The report estimates that the numbers of children with complex forms of autism have more than doubled since 2004, to 57,615.
A Department for Education spokesperson said: “The definition of complex needs is not straightforward, so data is not always comparable. We know from our own data that diagnosis of autism has increased significantly over the last decade, with rising awareness of the condition. At the same time, there have been significant decreases in the number of pupils identified as having moderate learning difficulties.
“The changes we introduced in 2014 put children with special educational needs and their families at the heart of the system, and we have given councils £223m of additional funding over four years to support these reforms. We have also provided £23m of additional revenue funding this year to help councils review their special educational needs provision, including special schools.”
The Local Government Association said special educational needs provision was significantly underfunded. Cllr Richard Watts, chair of the Local Government Association’s Children and Young People Board, said: “Councils are doing everything they can within the resources available to make sure children are being supported and getting the help that they need.”