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For a new parent, learning that their child is disabled is usually a profoundly shocking experience. How that news is conveyed to them, and how they feel at the time is something they will remember for the rest of their lives and can influence how well they are able to bond with their child.

For professionals too, diagnosing a severe disability in a child and telling the parents may be a distressing experience for which they feel ill-prepared.

Together from the Start, a consultation issued jointly by the Department for Education and Skills and the Department of Health sets out draft guidance for professionals to help them deal with difficult issues such as this, and more generally to improve services for very young disabled children and their families.¹ It has been drawn up in close consultation with a working party whose membership includes experts from the voluntary sector, health and education.

Lesley Campbell, national children's officer for Mencap and member of the working group, explains: "It's about setting families off on the right path. All the evidence shows that if we can get this bit right, families cope better and feel more positive about using services."

The guidance also covers key worker systems and multi-agency working, provision of information to parents and planning a family-centred approach to service delivery. At the moment, particularly where a child has multiple disabilities, families may be confronted with a bewildering array of disparate services at different clinics and at different times. They may have to deal with as many as 20 different professionals asking the same, often distressing questions again and again. Part of the vision of Together from the Start is that families will enter a unified, family-friendly system with a key worker to guide them through the complexities of the services their child may need and help them find relevant information and support.

Julie Jennings, early years development officer at the Royal National Institute for the Blind says: "No one can be expert in all areas for children with complex needs, but there is a degree of overlap. A key worker system can take some of the stress out of the early days. The aim is to work together and see the child as a whole."

The guidance is not only for professionals working in specialist services, but for people in mainstream early years and health services which have the potential to enrich the lives of disabled children. Campbell believes an important message is the need to include families who at present don't use services, such as people from some ethnic minority groups and people facing social and practical difficulties as well as their child's disability.

"Both specialist and mainstream services need to recognise that there are large numbers of families who never access them," Campbell says. "It may be that the child is first identified as having a development delay which then gets called a learning difficulty. One or both parents may themselves have a learning difficulty. The guidance focuses on the kinds of skills which staff need to work with people. It encourages them to think about how they can design services to make them more friendly to hard-to-reach families."

A second consultation from the DfES and the Royal National Institute for Deaf People (RNID) focuses on the need to develop early support services for deaf children and their families.² In most parts of the country, deafness is often not diagnosed until a child is around 18 months old and in around a quarter of cases is not picked up until the child is three and a half. With the implementation of universal newborn hearing screening, deafness can be identified as early as two months. Universal screening is being piloted in 20 areas and is intended to cover the whole of the UK by 2006.

As Anne-Marie Hall, education development manager at the National Deaf Children's Society explains, early diagnosis has many benefits. She says: "You can't over-estimate the difference early diagnosis makes, especially for communication and language development. With the right support and encouragement you would expect to see age-appropriate language and development. With later diagnosis, you're in a catch-up situation." A deaf child who is not diagnosed until toddlerhood misses out on vital early language and communication development. This often leads to poor communication between child and family and perhaps behaviour problems in the child.

For early identification of deafness to occur services need to work with much younger children. But provision of early years support is patchy. Services are best developed in areas where universal infant screening has been available for some years.

Hall explains: "The challenge for teachers of the deaf is to work with parents of young children. Teachers may be going into the home once a week but parents are there all the time. It's about giving support and information around choices for communication and what they can do to facilitate language and communication."


In parallel with the two consultations, the DfES has instigated an early support pilot programme to identify examples of good practice which can then be refined and disseminated to practitioners. John Ford, programme director, is on secondment from the DfES to work closely with the RNID and National Children's Bureau. He explains that the intention is to develop a "toolkit" for good practice to underpin the generic 0-2 guidance and the development of early intervention services for deaf children and their families.

The toolkit, to be published next spring, will cover strands including developing multi-agency services, involving parents in the development of services, information for parents, effective key worker systems plus an audit mechanism so services can test their own provision. Ford says: "The aim is to look at the good practice out there and develop some common principles that should be followed in providing integrated services based around the needs of individual families and children with low incidence disabilities."

He adds: "There may be more than one way of doing this depending, for example, on whether it's a rural area with high travel costs or an area with many ethnic minority families. There might need to be a different approach for visual impairment or for other specific disabilities." The list of projects chosen to receive grants to participate in the pilot programme will be announced in the autumn.

The two sets of guidance and the toolkit will feed into the forthcoming national service framework for children. Members of the working group hope this will be supported by a generous spending review settlement next year. However, says Jennings, new ways of working do not necessarily mean more expenditure. She describes how Cambridgeshire has evaluated its multidisciplinary assessments for young children with low vision and found they are cost-effective. "It was a better use of existing resources. Normally, families would be expected to attend lots of separate assessments. Families found it helpful because they could talk to all the professionals at once and it led to an agreed joint plan."

On the other hand, aspects of the guidance are unlikely to be implemented unless more resources are forthcoming. Campbell says: "Some services can seem very rigid in how they do things and need a radical redesign. The guidance provides some pointers to do that. But without new money some of the recommendations seem like an idealistic dream."

¹ Together from the Start ,DfES and DoH, 2002, from www.dfes.gov.uk/consultations

² E Andrews, Developing Early Intervention/Support Services for Deaf Children and their Families, RNID/DfES, 2001

Fragmented services add stress

"On first visiting Faye, her mother gave me a plastic counter and explained how I should use it. There were eight professionals trying to offer support. There was little time in the week for mother to enjoy Faye and none to at all to shop, wash or do the housework. If Faye's mother felt I had something positive to offer she would give me a counter to push through the letter box on my next visit. Those professionals who did not receive another counter were not allowed back into the house. Faye's mother made all of us think about what it means to provide joined up services."

Source: Together from the Start