Making the connection:Early support
Early Support is a joint initiative by the Department for Education and Skills, Sure Start and the Department of Health, to improve services for the families of children with disabilities. It attempts to put into practice the principles outlined in Together from the Start, published by the Government in May 2003, and stresses the importance of early identification of special needs and disabilities.
Early Support aims to make better information available to families, and to increase the involvement of parents in the development of services for their children. It also aims to improve co-ordination of multi-agency support, and to encourage professionals to work in partnership across education, health and social services, as well as across geographical areas.
Elizabeth Andrews, deputy director of Early Support, says provision for very young children with disabilities was "a leaky bucket". Some families, she says, received good information and support; others did not. "We are trying to standardise provision and plug the gaps," she says.
The programme is intended to be particularly beneficial for the families of children with complex needs, who are helped by a large number of professionals. These families can find themselves making endless appointments and seeing professionals who are not aware of the contribution of others who have seen the family.
"Families say that before Early Support the system required them to repeat their story to every professional they met - and they could be in contact with as many as 15 to 20 people," says Andrews.
HOW EARLY SUPPORT WORKS
Early Support consists of a set of materials to be used by families and professionals as part of an effort to build a more effective relationship between them.
The Early Support family pack, which is given to families, comes in a smart, blue suitcase. Inside is a hefty file of background information, which divides the help and services available into manageable chunks. The idea is that the suitcase (which includes a compartment in which to store relevant paperwork) stays at home, while the family file, a family-held record in a soft blue cover, accompanies the child to every appointment.
Families enter as many details as they choose about themselves and their child in the family file, including the child's capabilities, likes and dislikes, medication and equipment needs. One page is simply headed:
"Things we would like you to know about X so we don't have to keep repeating it every time we meet someone new."
There is also a section in which to list the professionals the family is working with, and a family service plan, which families complete with professionals. It sets out the help the family feels it needs, and the next steps, with questions to answer on "Who can help and how?" and, crucially, "How will we know if it has made a difference?"
Clearly, some families will need more help and encouragement in filling this in than others, says John Ford, director of Early Support. "The process is not going to work if professionals complete it all for the parents. There has to be parental input so that parents have a sense of ownership and feel they are being listened to."
As well as the family pack, Early Support has produced a series of booklets on disabilities in very young children, including cerebral palsy and autistic spectrum disorders. And there is a booklet called When Your Child Has No Diagnosis. It is aimed at the many children who have special needs where there is no clear cause of their difficulties.
Also available are an audit tool that encourages multi-agency planning, and a development profile (the monitoring protocol for deaf babies and children) that helps parents know what to expect from children who are found to be deaf when screened as newborns.
The materials are disseminated by Early Support pathfinder areas, of which there are now 45 across the country, centrally-funded until 2006. Each pathfinder chooses its own mode of operation, but an over-arching idea is to use key workers to liaise between the families and the professionals they see. Training is also vital.
Linda Fisher, the co-ordinator for Essex, expects Early Support to make "a huge difference - because the practitioners are challenged by it. The materials are the driving force, and we have to make it co-ordinated, create a team around the child."
WHAT PARENTS THINK
Jo Stone, a former Essex teacher, is the mother of three-year-old twins, both with complex disabilities. The twins were born in Southend, but were moved to a London hospital, ending up with consultants in both places.
"I was forever telling different people the same thing - it was horrendous," she says. "You had to spend half an hour talking about your child before you got on to what they would do."
Early Support was not then in existence. Jo Stone made her own file, bought a computer, gave up her job, and, with the help of a good social worker, she managed. "If I'd had the Early Support Family Pack from the beginning it would have been a great help: the background information is fantastic, and I didn't realise how many people could have helped."
Nicola Grundy, mother of three-year-old Alfie, who has a hearing impairment, decided, when he was 16 months old, to take part in the Salford pilot of the Early Support monitoring protocol for deaf babies and children. The process, she says, was not only enjoyable but gave her a sense of accountability and control, with realistic targets.
"This offers support and reassurance. Before Early Support, it was hard to find information, but the protocol is like a reference book, which you delve into - I can't imagine living without it," says Grundy.
"I talk to my Early Support key worker for about an hour a week about what's happening, and that is very important. This has to be a two-way thing, otherwise it won't work."
WHAT PROFESSIONALS THINK
Anne Sharpe is a pre-school teacher of the deaf in Salford. She got involved in the first phase of Early Support two years ago.
"It helps me because I can talk to the family about what they want, and I can take the whole family situation into account, which didn't happen before. Also, there's much more joined-up working now between agencies; you can find out what others are doing," she says.
"For children with complex needs, we now try to arrange for a group of professionals - for example, a home visitor, an occupational therapist, a physiotherapist, and myself - to make joint visits once a month. It means we listen to one another, and it's easier for the families - otherwise they are always looking at the calendar."
Jeanette Costello, a Portage home visitor in Salford, is pleased with the way Early Support is involving parents in decisions about the services their children need. The family packs, she says, "can seem a little daunting at first - but it's not just information on its own, it comes with a professional, and you take it step by step".
Costello believes some professionals may resist Early Support because they think it heralds unnecessary changes. "But it's gathering support in Salford and most professionals are taking it on board," she says. "This is something that needed to happen a long time ago."
The Early Support website is at www.espp.org.uk