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The government says that early intervention is the cornerstone of its special educational needs (SEN) strategy. So why is it that thousands of families are missing out on support that can make a huge difference to the development of a disabled child?

"Early intervention" means different things to people in different contexts. With disabled children it means "any activity designed to promote the learning and development of young disabled children".

Early intervention can cover play, therapy, early education etc. It could be anything from a very short programme to tackle, say, a sleep problem, to a complex behaviour programme designed to run for several years. Early intervention also includes physiotherapy, occupational therapy and speech and language therapy. There are also several "branded" early interventions such as Portage and EarlyBird.

There is a growing recognition that for disabled children a postcode lottery exists for early intervention with many children and families missing out completely on the very early support that would make a difference. For too many children early intervention is not early enough, with crucial months or even years missed. For other children, precious time and resources are wasted on interventions that are ineffective.

There are, of course, pockets of excellent practice around the country, in special schools and specialist centres as well as mainstream services. However, the evidence base for early intervention for disabled children is weak. Even when early interventions have been evaluated these messages from research are not effectively disseminated. For parents and practitioners it is a struggle to find out which early interventions work with which children, and how to be trained to deliver these interventions.

Children with all types of disability benefit from early intervention. The main issue that needs researching is which specific interventions would provide maximum benefit to which children at which age.

The Department for Education and Skills has acknowledged this need for research in its strategy for SEN, Removing Barriers to Achievement, which includes a feasibility study to set up a National Centre for Early Intervention.

The SEN strategy states: "It is vital that early identification is followed up by efficient early intervention so that parents can be confident that once problems are identified help will be forthcoming."

Mencap is leading this feasibility study which reports to the DfES in March 2005. Through the study an alliance of parents, practitioners and charities is being built that want to see much more focus on early intervention for disabled children in the UK.

Paul Ennals, head of the National Children's Bureau says: "Many disabled children have been missing out for too long on the early interventions that would improve their life chances."

• The facts
  
  The changing population of disabled children
  
  There are many changes in the population of disabled children that show the need for focusing on early intervention:
• There are about 248,292 children aged five and under who have a disability - about 6% of the population (Cabinet Office)
• The new universal national hearing screening (UNHS) for babies is predicted to produce a 50% increase in deaf babies identified in the neonate phase and 60% of these babies will have additional impairments.
• Twenty-five years ago only 20% of babies born after less than 28 weeks' gestation survived. Today, 80% of those babies survive.
• The UK has the highest rate of low birthweight babies in Western Europe. The number of low birthweight babies is increasing, with an 11 per cent rise between 1993 and 2000.
• Half of all babies who survive very premature birth grow up with a disability.
• The prevalence of severe disability among children is highest in those under five years old.

Government targets

The government's National Service Framework for Children sets standards for all children's services for the next 10 years. Early intervention and early support for parents of disabled children are central themes in the NSF.

Core standards include:

• Supporting parents and carers by providing information, services and support.
• Disabled children and their families to receive co-ordinated, high-quality child- and family-centred services.
• Introducing a child Health Promotion programme, strengthening early intervention by enabling children to receive help at the first onset of problems.
• Children with developmental delay should receive early intervention to address their needs, provided by a range of health, education and social care professionals in a range of settings.
• Co-ordinated multi-agency assessments leading to prompt, convenient, responsive and high quality multi-agency interventions that maximise children's ability to reach their full potential.

Case study

Gillian Upton Holmes's son Hal was born with cerebral palsy and severe learning disabilities. When he was six months old a paediatrician told Gillian "Having a disabled child is hell, you know." Three months later Gillian visited a private consultant who was much more helpful and gave Hal a formal diagnosis of cerebral palsy.

Gillian experienced excellent early intervention from the education department. She had a parent partnership officer who took her round to visit lots of special schools and was very supportive. Hal started formal education at three years old, which was invaluable to his development.

Gillian and Hal also benefited from joining a family support group - Ryedale Special Families. The group was run by parents and professionals jointly, giving both the chance to share experiences and knowledge, and allowing them to express their views in a non-judgemental setting. They combined social events with meetings to discuss the latest policies for their children.

As a result Gillian developed a better understanding of the system, and became more adventurous in getting Hal involved activities with other children. Hal is now a happy relaxed 11-year-old child and Gillian feels they all gained strength from the family support group, by being with other parents and having positive attitudes. It also changed stereotyped views of professionals and the parents themselves of what a disabled child can achieve.

Please help shape the future by giving us your views and by filling in our online survey at www.earlyintervention.org.uk

Lesley Campbell is national children's officer at Mencap.